Streptococcus can suckmycockus, and influence, you're a bitch.
Shit.
We keep taking the 1-2 punch, but we're still standing, bouncing around the ring, trying to fight diseases left and right.
After Drew's ear infection/group F strep debacle, he finished his antibiotics and went right back to Cranky Drew. I had a full bottle of ezithromycin that had yet to be mixed (when you go to the pharmacy as much as we do, they have to give you unmixed bottles of medicine so that it will simply last you the dosage that the doctor prescribes), so I mixed it and gave it to him until it was gone. That was over the period of about 3 weeks. A week after that, his sinus infection came back with a vengeance. Nasty, yellow snot and boogers. The poor kid couldn't breathe, but rather than dope him with more medicine, I prayed to God that his immune system would do the work it needed to, and take it away on it's own.
It has gotten better, but he still has a runny nose. Cue the week before Catherine's tonsils and adenoids surgery, and she flares hardcore on Tuesday. Wednesday, the runny nose shows back up. Fuck me. I am thinking they will postpone the surgery, as she is flaring and her nose is now leaking green, nasty goop, but they don't.
I demand (nicely) that they send the tonsils and adenoids in to be cultured. They do. One and a half weeks post-surgery, the results have come back. Catherine has an overgrowth of provetella oris (not overall bad, but when there is an overgrowth, it causes respiratory illness), and INFLUENZA. Fucking awesome.
But I get ahead of myself, because in the middle of Catherine flaring and going crazy and not sleeping EVER, I start to get run down and overwhelmed with the lack of sleep and taking care of a crazy kid. Monday, I start feeling the drainage down the back of my throat and Tuesday, I have a full-blown sinus infection with a fricken fever.
So I head to the doctor and she swabs me for strep. Guess what? FUCKING STREP. Yes, I have Group A Strep, the same strep that caused Catherine to lose her mind in the first place. Seriously. Can we not catch a fucking break?
Luckily, we, as a family, went to see our general practitioner today so that she could swab all of us. Yes, all of us. I want to know what nasties this family is carrying around. We already know that I am asymptomatic strep (no sore throat, no raging fever etc), and we know Drew is susceptible to strep, and we know that strep has caused Catherine's autoimmune disorder. So, let's start figuring some shit out, shall we?
I will be anxious to see what Drew's culture comes back with. Luckily, in all of this, our general practitioner agrees to start treating Catherine's runny nose with antibiotics OTHER THAN penicillin, and the ENT said the same thing. So now, they will confer, and we will hopefully figure out a badass antibiotic to knock these other co-infections out of the park. Hopefully, we have a somewhat normal Catherine once school starts up, so we don't have so much anxiety and despair when putting our little girl on that bus.
I feel like shit, which is good, because I am not really giving a shit about much. I am not worrying, I am not maniacally researching shit on google. I am just letting it be. So maybe it's a blessing in disguise. Or maybe God is laughing at me. I don't know.
But I do know that we are getting ANSWERS. That's more than we've had before.
Thursday, August 10, 2017
Sunday, July 23, 2017
Thankful: PANDAS Update #6
Eric and I very tentatively agreed to ight that Catherine is getting better.
We didn't see much difference on the penicillin, and she even developed new tics. So I said to hell with modern medicine, and went the natural route.
I don't know if it's the figs and dates we feed her three times a day. Or the magnesium we give her every day. Or the lavender and Epsom salt baths we give her every other day. Or the oregano oil I diffuse in her room every night. Or the melatonin we give her every night. Or the 2000 mg grams (10 pills) of fish oil we give her every day, in three mighty doses.
We don't know if it's the gluten free, dairy free, soy free, artificial dye free, artificial flavor free, banana/berry/melon free diet we have her on. Which, by the way, we started, balls to the wall, last Monday.
We don't know if it's the fact that she is now beginning to access those files that she has had all along or if she is simply developing. Is she actually getting better? Or just moving to the next stage in her oh-so-late development?
But she is trying new things. Her behaviors aren't out of control. Her tics are almost completely gone unless she is extremely tired, which is usually by 6 p.m. every night. She LOOKS healthy. She seems happier. She plays better with her siblings. Her aggression is nearly gone.
Her anxieties are still there, but tonight Eric and I discussed if this might just be the by-product of learned behaviors. Catherine is slowly learning how to be brave. At the park today, she climbed the ladders by herself and went down. The gigantic three story (15 ft) enclosed slide by herself. Two months ago, she would have been screaming at the second story for one of us, throwing a fit in front of everyone, flailing her arms and legs about, and then begging for us to take her back down. That's IF she even got that far.
Her words are becoming clearer. She is attempting to use new words. She runs more normal every day. She insists on walking more than she ever has. She understands choices instead of fixating on exactly what she wants to do.
Something is changing, and we are quietly holding our breath, squeezing our eyes tight, and praying that this, whatever THIS is, takes us out of these dark, dark woods.
I am crossing my fingers, praying, hoping, continuing to seek answers, and religiously feeding Catherine natural supplement after natural supplement.
We are seeing glimpses of the Catherine that we knew was in there. She is giving us glimpses of the knowledge she has, and she is smart. It's like she has all the files, but she can't access than all the time.
Keep praying, friends. We can feel it.
We didn't see much difference on the penicillin, and she even developed new tics. So I said to hell with modern medicine, and went the natural route.
I don't know if it's the figs and dates we feed her three times a day. Or the magnesium we give her every day. Or the lavender and Epsom salt baths we give her every other day. Or the oregano oil I diffuse in her room every night. Or the melatonin we give her every night. Or the 2000 mg grams (10 pills) of fish oil we give her every day, in three mighty doses.
We don't know if it's the gluten free, dairy free, soy free, artificial dye free, artificial flavor free, banana/berry/melon free diet we have her on. Which, by the way, we started, balls to the wall, last Monday.
We don't know if it's the fact that she is now beginning to access those files that she has had all along or if she is simply developing. Is she actually getting better? Or just moving to the next stage in her oh-so-late development?
But she is trying new things. Her behaviors aren't out of control. Her tics are almost completely gone unless she is extremely tired, which is usually by 6 p.m. every night. She LOOKS healthy. She seems happier. She plays better with her siblings. Her aggression is nearly gone.
Her anxieties are still there, but tonight Eric and I discussed if this might just be the by-product of learned behaviors. Catherine is slowly learning how to be brave. At the park today, she climbed the ladders by herself and went down. The gigantic three story (15 ft) enclosed slide by herself. Two months ago, she would have been screaming at the second story for one of us, throwing a fit in front of everyone, flailing her arms and legs about, and then begging for us to take her back down. That's IF she even got that far.
Her words are becoming clearer. She is attempting to use new words. She runs more normal every day. She insists on walking more than she ever has. She understands choices instead of fixating on exactly what she wants to do.
Something is changing, and we are quietly holding our breath, squeezing our eyes tight, and praying that this, whatever THIS is, takes us out of these dark, dark woods.
I am crossing my fingers, praying, hoping, continuing to seek answers, and religiously feeding Catherine natural supplement after natural supplement.
We are seeing glimpses of the Catherine that we knew was in there. She is giving us glimpses of the knowledge she has, and she is smart. It's like she has all the files, but she can't access than all the time.
Keep praying, friends. We can feel it.
Thursday, July 13, 2017
Renewal: PANDAS Update #5
I do not know how Catherine is still going. From Tuesday into Wednesday, she slept about 8 hours, and then didn't take a nap. Last night into today, she slept less than 4 total and took an hour nap. She is hyperactive, jittery, and overall, not my little girl.
We met with the psychologist yesterday. She seemed to be very open to the fact that she doesn't know a whole ton about PANDAS, but has helped PANDAS families, and is open to helping us. She gave us a few good resources on which to build, and hopefully, those stick. We threw those out the window today. Catherine was so out-of-control I had no idea what else to do but yell. When I raised my voice, she would listen, but barely. It makes you feel like a crappy parent.
While they were in the basement with the neighbor girl, I took a shower. But I didn't actually take a shower. I took a break. A break from the incessant noise. A break from the incredible stress. I cried. I let it all out. I tried to gather my wits about me. I am so stressed out, I feel sick to my stomach most of the time. I can hardly choke anything down. I am exhausted all the time. Monday night was amazing. We PLAYED. As a FAMILY. It was amazing. Absolutely transformational. It was hopeful.
That shattered at 5:37 a.m. on Tuesday morning, when Catherine was trying to get out of her room. She couldn't open the door. So she threw herself at it, incredibly frustrated and furious at herself that she could not get it open. She threw herself on the ground. She worked herself into such a state that when I opened the door, she barely seemed to recognize me.
Last night, Eric and I watched, "My Kid is Not Crazy." It was a documentary about PANDAS that came out last year, and follows 6 families who had children diagnosed with PANDAS. 4 children came out of it. They got better with IV Ig (NOT covered by our insurance), therapies, and a lot of love from parents who wouldn't give up. Antibiotics helped.
2 of those families had kids who didn't bounce back. Of course, you have to look at the course they were on. Doctors who didn't know, parents who didn't do enough research, or had children who were diagnosed too soon in the controversy. One doctor put it very well: "We believe that strep causes inflammation of the skin, called Scarlett Fever. We believe that strep causes carditis, inflammation of the heart, called Rheumatic Fever. Why wouldn't we believe that strep could cause inflammation of the brain?"
And because of this controversy, there are doctors who truly don't believe this exists. Walk a day in my shoes. I can tell you, this DOES exist and it's very real.
I cannot fathom going back to school. In two weeks, I have a retreat for my select choir. I have not begun to even plan for it. I haven't ordered All-State Music. I haven't done anything to prepare for school like I normally do. I would like to get back to my normal life, but what about this life is actually normal? Not much.
At our psychology appointment yesterday, she said we wanted to "Encourage Bravery" in Catherine. I need to encourage bravery in myself. To not be afraid of what I am going to wake up to the next day, and instead, meet it head on. To take Catherine's tics and jerky movements and odd behavior in stride, instead of being paranoid at when the next shoe will drop. But it's so hard. Because we have seen glimpses of who Catherine can be. And we have seen glimpses of who Catherine is NOT. And that is what scares me the most.
I could kill myself over the what-if's, and I try not to, but after talking with the intake nurses at the Psychiatrist office in Minneapolis that I called a few days ago, they can't get us in until December. Really? That is a long time away. How much longer can we wait until there is permanent damage? Until we CAN'T come back from this?
I wish this blog could go back to my days of pregnancy updates and monthly milestones, rather than this cursing of PANDAS. But here I sit, at my dining room table, watching a little girl who should be exhausted run around the ground floor with a bow in her hair. It's pretty cute that she thinks it's the greatest thing ever, but at the same time, I can't help but wonder how tired she must be. How absolutely tired her body must be.
And how much MORE tired I can get. Here's to another day, another PANDAS update, and another course of antibiotics. The naturopath is tonight. Wish us luck. Pray for us. And someone, please help us.
We met with the psychologist yesterday. She seemed to be very open to the fact that she doesn't know a whole ton about PANDAS, but has helped PANDAS families, and is open to helping us. She gave us a few good resources on which to build, and hopefully, those stick. We threw those out the window today. Catherine was so out-of-control I had no idea what else to do but yell. When I raised my voice, she would listen, but barely. It makes you feel like a crappy parent.
While they were in the basement with the neighbor girl, I took a shower. But I didn't actually take a shower. I took a break. A break from the incessant noise. A break from the incredible stress. I cried. I let it all out. I tried to gather my wits about me. I am so stressed out, I feel sick to my stomach most of the time. I can hardly choke anything down. I am exhausted all the time. Monday night was amazing. We PLAYED. As a FAMILY. It was amazing. Absolutely transformational. It was hopeful.
That shattered at 5:37 a.m. on Tuesday morning, when Catherine was trying to get out of her room. She couldn't open the door. So she threw herself at it, incredibly frustrated and furious at herself that she could not get it open. She threw herself on the ground. She worked herself into such a state that when I opened the door, she barely seemed to recognize me.
Last night, Eric and I watched, "My Kid is Not Crazy." It was a documentary about PANDAS that came out last year, and follows 6 families who had children diagnosed with PANDAS. 4 children came out of it. They got better with IV Ig (NOT covered by our insurance), therapies, and a lot of love from parents who wouldn't give up. Antibiotics helped.
2 of those families had kids who didn't bounce back. Of course, you have to look at the course they were on. Doctors who didn't know, parents who didn't do enough research, or had children who were diagnosed too soon in the controversy. One doctor put it very well: "We believe that strep causes inflammation of the skin, called Scarlett Fever. We believe that strep causes carditis, inflammation of the heart, called Rheumatic Fever. Why wouldn't we believe that strep could cause inflammation of the brain?"
And because of this controversy, there are doctors who truly don't believe this exists. Walk a day in my shoes. I can tell you, this DOES exist and it's very real.
I cannot fathom going back to school. In two weeks, I have a retreat for my select choir. I have not begun to even plan for it. I haven't ordered All-State Music. I haven't done anything to prepare for school like I normally do. I would like to get back to my normal life, but what about this life is actually normal? Not much.
At our psychology appointment yesterday, she said we wanted to "Encourage Bravery" in Catherine. I need to encourage bravery in myself. To not be afraid of what I am going to wake up to the next day, and instead, meet it head on. To take Catherine's tics and jerky movements and odd behavior in stride, instead of being paranoid at when the next shoe will drop. But it's so hard. Because we have seen glimpses of who Catherine can be. And we have seen glimpses of who Catherine is NOT. And that is what scares me the most.
I could kill myself over the what-if's, and I try not to, but after talking with the intake nurses at the Psychiatrist office in Minneapolis that I called a few days ago, they can't get us in until December. Really? That is a long time away. How much longer can we wait until there is permanent damage? Until we CAN'T come back from this?
I wish this blog could go back to my days of pregnancy updates and monthly milestones, rather than this cursing of PANDAS. But here I sit, at my dining room table, watching a little girl who should be exhausted run around the ground floor with a bow in her hair. It's pretty cute that she thinks it's the greatest thing ever, but at the same time, I can't help but wonder how tired she must be. How absolutely tired her body must be.
And how much MORE tired I can get. Here's to another day, another PANDAS update, and another course of antibiotics. The naturopath is tonight. Wish us luck. Pray for us. And someone, please help us.
Saturday, July 8, 2017
Breaking Point: PANDAS Update #4
I. Am. Breaking.
I can feel it in every bone in my body. I am forcing myself to eat. I can't sleep, and when I do, I dream about IVIG and blood brain barrier and fucking essential oils.
I can sense it in my anxiety. I can feel it in my lack to do anything else but SOLVE THIS PROBLEM.
Catherine is not getting better. In fact, she is getting worse.
Compound that with the fact that Drew has Group F Strep, I about sailed over a cliff the other day. Not for real, because what would Catherine do without me, but seriously, I was dumbstruck by a fucking Mack truck.
I took Drew in to be looked at for a yeast infection last Sunday. I didn't think there was anything weird about his penis, except maybe a little diaper rash, but Eric said he was concerned. Since he also has a penis, I listened and took Drew to urgent care. She didn't check his ears, but sent us away with a yeast infection and some Nystatin.
On Monday, he was grabbing his ears and was out of sorts, so I took him in again to have his ears checked. Ear infection.
On a hunch, I asked her to swab for strep. The random doctor that we saw in the practice, since our primary doctor was full that day, said strep was rare in children under the age of two.
I didn't give two shits, I told her Catherine had PANDAS and to swab for fucking strep, reaction be damned. She did. Rapid strep came back negative. After eight minutes of trying to keep fussy Drew happy waiting for the strep test, again, I said reaction be damned. I asked her to send it in for a culture. She looked at me weird. JUST SEND IT IN TO BE CULTURED!!
So she did. We got the results back on Thursday. Group F strep.
Positive note: PANDAS is associated with group A strep. But at the same time, he is an asymptomatic carrier of strep. He, who plays with Catherine and takes drinks from her sippy cup, has fucking strep. STREP! The one fucking illness that i have come to loathe with every ounce of my being.
When I got the results from the nurse, I asked her what she knew about group F strep. She said "I don't know much, but I do know that it's very rare." FUCKING AWESOME.
I immediately launched into a panic attack. I am tired. I am weak. I am trying to hold this family together as much as possible. I am trying to help Catherine. Did I mention I am trying to keep my shit together in public as much as possible? Just today James had a birthday party to go to and while he and all the other adults played games, I sat in the corner, trying to read even more shit on PANDAS than I already have. I was sitting in a corner trying to keep my shit together. For 45 minutes. I tried shopping online to clear my head, which helped.hold the tears back. I had a text convo with a friend, in an effort to lighten my mood. It helped, but then I am right back where I was before. As soon as I get an idle moment.
So back to it: Catherine is not getting better, and here is how I know. She gags.
Not a big deal to other people, I am sure. So she doesn't like the taste of her food. Not a biggie. Give her something else. Easier said than done.
It's not actual gagging. It's a tic. And when it happens, she refuses any further food. She is done. She might eat one cracker for snack and a bag of pretzels, like tonight. And then she's done. No wonder she is so small.
I noticed the gagging about 2 weeks ago, but like a parent with a normal child, I chalked it up to gagging. So she didn't like the food. Weird, because she usually likes the food I give her. But she is not normal. This disease is not normal. Our lives are no longer normal.
She gagged so visibly and forcefully, the guy at the other table said, "Boy, she sure didn't like the taste of that bun!" But she didn't gag. It's a tic. A bad one. A facial grimace, a head shake, and a noise. BEFORE she takes a bite. It's hard to tell and I will attempt to record it. But it's not normal. And it's a marker in the fact that she isn't getting better.
And that has me balancing on a dangerous precipice. I will not give up permanently, but part of me maybe needs to give up for a little while. Manage her behaviors. Figure out the right dosage of medicine. And bide my time until the genie shows up and grants me three wishes.
I would take this awful disease away from Catherine. I would give her the speech she doesn't have. I would give wishes to all the other PANDAS mom's out there.
I am breaking, friends. I need prayers. I need support. I need love. I need to know I am doing right by Catherine. I need to know I am not a shitty mom. I need to know my other kids don't feel neglected. I need to know I am making headway with this awful disease that has taken Catherine's normalcy away from her. I need people to stop staring as she freaks out, or gags, or hums. I need judgmental eyes to be done looking at me. I need Pat's on the back. I need a fucking drink. Or some pot. Or both. I just need to accept that this is going to be the hardest thing I have ever done. Moreso than losing my dad (dad, I really fucking need you to help me out here!!), the PTSD, Eric's alcoholism from ages past.
This is the hardest thing I have ever done. I am breaking. Pray for us, because we need it.
I can feel it in every bone in my body. I am forcing myself to eat. I can't sleep, and when I do, I dream about IVIG and blood brain barrier and fucking essential oils.
I can sense it in my anxiety. I can feel it in my lack to do anything else but SOLVE THIS PROBLEM.
Catherine is not getting better. In fact, she is getting worse.
Compound that with the fact that Drew has Group F Strep, I about sailed over a cliff the other day. Not for real, because what would Catherine do without me, but seriously, I was dumbstruck by a fucking Mack truck.
I took Drew in to be looked at for a yeast infection last Sunday. I didn't think there was anything weird about his penis, except maybe a little diaper rash, but Eric said he was concerned. Since he also has a penis, I listened and took Drew to urgent care. She didn't check his ears, but sent us away with a yeast infection and some Nystatin.
On Monday, he was grabbing his ears and was out of sorts, so I took him in again to have his ears checked. Ear infection.
On a hunch, I asked her to swab for strep. The random doctor that we saw in the practice, since our primary doctor was full that day, said strep was rare in children under the age of two.
I didn't give two shits, I told her Catherine had PANDAS and to swab for fucking strep, reaction be damned. She did. Rapid strep came back negative. After eight minutes of trying to keep fussy Drew happy waiting for the strep test, again, I said reaction be damned. I asked her to send it in for a culture. She looked at me weird. JUST SEND IT IN TO BE CULTURED!!
So she did. We got the results back on Thursday. Group F strep.
Positive note: PANDAS is associated with group A strep. But at the same time, he is an asymptomatic carrier of strep. He, who plays with Catherine and takes drinks from her sippy cup, has fucking strep. STREP! The one fucking illness that i have come to loathe with every ounce of my being.
When I got the results from the nurse, I asked her what she knew about group F strep. She said "I don't know much, but I do know that it's very rare." FUCKING AWESOME.
I immediately launched into a panic attack. I am tired. I am weak. I am trying to hold this family together as much as possible. I am trying to help Catherine. Did I mention I am trying to keep my shit together in public as much as possible? Just today James had a birthday party to go to and while he and all the other adults played games, I sat in the corner, trying to read even more shit on PANDAS than I already have. I was sitting in a corner trying to keep my shit together. For 45 minutes. I tried shopping online to clear my head, which helped.hold the tears back. I had a text convo with a friend, in an effort to lighten my mood. It helped, but then I am right back where I was before. As soon as I get an idle moment.
So back to it: Catherine is not getting better, and here is how I know. She gags.
Not a big deal to other people, I am sure. So she doesn't like the taste of her food. Not a biggie. Give her something else. Easier said than done.
It's not actual gagging. It's a tic. And when it happens, she refuses any further food. She is done. She might eat one cracker for snack and a bag of pretzels, like tonight. And then she's done. No wonder she is so small.
I noticed the gagging about 2 weeks ago, but like a parent with a normal child, I chalked it up to gagging. So she didn't like the food. Weird, because she usually likes the food I give her. But she is not normal. This disease is not normal. Our lives are no longer normal.
She gagged so visibly and forcefully, the guy at the other table said, "Boy, she sure didn't like the taste of that bun!" But she didn't gag. It's a tic. A bad one. A facial grimace, a head shake, and a noise. BEFORE she takes a bite. It's hard to tell and I will attempt to record it. But it's not normal. And it's a marker in the fact that she isn't getting better.
And that has me balancing on a dangerous precipice. I will not give up permanently, but part of me maybe needs to give up for a little while. Manage her behaviors. Figure out the right dosage of medicine. And bide my time until the genie shows up and grants me three wishes.
I would take this awful disease away from Catherine. I would give her the speech she doesn't have. I would give wishes to all the other PANDAS mom's out there.
I am breaking, friends. I need prayers. I need support. I need love. I need to know I am doing right by Catherine. I need to know I am not a shitty mom. I need to know my other kids don't feel neglected. I need to know I am making headway with this awful disease that has taken Catherine's normalcy away from her. I need people to stop staring as she freaks out, or gags, or hums. I need judgmental eyes to be done looking at me. I need Pat's on the back. I need a fucking drink. Or some pot. Or both. I just need to accept that this is going to be the hardest thing I have ever done. Moreso than losing my dad (dad, I really fucking need you to help me out here!!), the PTSD, Eric's alcoholism from ages past.
This is the hardest thing I have ever done. I am breaking. Pray for us, because we need it.
Thursday, July 6, 2017
The Rally: PANDAS Update #3
Ok friends, I am slowly rallying. Slowly. But rallying, nonetheless.
My friend put it best last night - I am in mourning. First stage is denial, and there I sat after Catherine's diagnosis.
"Maybe it's not as bad as I thought."
"Maybe she's just slow."
"Maybe school will help more than we think."
"Maybe the doctor was wrong and it's something else."
And then there's:
"OH! A new word!"
"WOW! I've never seen her do that before."
"Oh lordy, she's hilarious."
And then there's:
"What if I hadn't breastfed her?"
"What if I had caught her constipation early?"
"What if I had been more demanding of the doctors?"
"What if I would have discovered this SOONER?"
It's gotten to the point where I second guess myself. I talk myself through all the viable options that we had, and there aren't any.
The toughest part is that people aren't quite understanding. My mom, God bless her, figureed that penicillin would fix it. I thought so too, at first. The more I am understanding, the more that I realize this is not fixable. And people don't understand that. People don't understand something you can't readily explain. Like another friend put it, this is not easily explained like diabetes or cancer or food allergies. This is a lengthy explanation. And even then, people still don't understand.
This isn't bad parenting. This isn't a misbehaved child. This isn't a problem we can fix. This isn't a girl who is overtired, or sad, or angry, or a "pistol." Her brain is literally being attacked.
I am seeking counseling, but even so, this blog has helped immensely. It helps me work through my issues and the what-if's and the what-now's. It helps me sort my thoughts out, make sense of them, and be able to face them head on. Just look at the post from Monday. Or better yet, take a look at the one before that. Ayeesh, talk about jumping off a cliff.
It helps me deal with Catherine. The late nights and the night-terrors and the lack of communication. The TEMPER TANTRUMS. God the temper tantrums.
There are so many symptoms that I don't know about, that I don't understand. There are test results that I am reading blindly, which I have no idea how to actually decipher. I am putting together a plan when there are no "plans" that work for every kid. You just have to keep trying, keep managing, keep staying ahead of the disease.
So here's the plan of action:
1) Fix her gut. Gut issues are a huge source of mental health issues, and right now, her gut is most likely the issue that is causing the most problems. So we need to fix the gut. Get healthy gut flora in and get the bad out. Fix the leaky gut. Most likely with dietary amendments, which will be time consuming and costly.
2) Fix her brain. We have her on an IEP for school. That will help IMMENSELY as many of these parents who fight this have to fight it alone. We have a teacher who knows the disease and has seen it in her own classroom. I am thankful for that.
3) Fix her speech. School will also help with that. Eric and I have decided to implement sign language. From what I understand, and what I have observed with Catherine, she has truble with auditory processing (understanding what we are saying to her) and how to verbalize it back. Interestingly enough, the words are in her brain. She just can't understand them, or use them. So I think sign language will help. We just have to figure out what words we need to use the most.
And before I list the things I am terrified about, let me say this: I am a mom. Moms who are worth a damn give a shit about their kid. So before anyone thinks about saying, "You can't let that rule your life, Laura," realize that if I don't think about these things now, Catherine may not have a hope.
So here are the things I am terrified about:
1) School. I am terrified that they will get Catherine on a good day, and she will ace all the tests that will ultimately take away her IEP.
2) Insurance: We are lucky that we have good insurance, but PANDAS is not really a recognized disease and we will have a fight against us. If we are able to get Catherine diagnosed with something other than PANDAS (i.e. autism, auditory processing disorder, ODD, OCD, Tourette's) we will be eligible for Medicare (possibly), which could give us a broader sweep of what would be covered. Beyond that, we would also be eligible for respite care. Not necessarily something I want to pursue as I think that Catherine needs social interaction, but at the same time, sometimes mom and dad justneed a break. And quite frankly, her brothers do too.
3) Her brothers. I worry that they will not understand Catherine. Eric and I talked about how important it is to be a tighter family unit. We do a lot of things as a family, but we also don't do a lot of things as a family. For example, Eric took all three kids on a bike ride on the 4th of July, and in the afternoon, I took James and Catherine to the pool. So although we are out doing things, we aren't doing it together. I am worried that they will reject Catherine (yeah, I know, doubtful, but I don't want them to become resentful of the attention that we have to give them).
4) Social life. Sounds stupid, but I want Catherine to have friends. Right now, she doesn't understand social cues, or when her "friends" want to settle down and stop wrestling on the floor. So she will hit them. I don't know how to fix that.
5) Potty-training. Also seems stupid, but I don't want her in diapers in Kindergarten. Although that's the way it's looking. Also, I just want to be fucking DONE with diapers. You can't fault me for that.
6) I Love You. I want her, so badly, to say I Love You to me. Seems selfish doesn't it? But nothing is better than when your child tells you they love you. She can't say it. What if she can never say it. I know, I know, she will tell me in other ways, but there is something about those words.
7) Illness. I am now terrified by it. I have a list of things we need to do as a family in regard to keeping the house clean. We are having the vents cleaned. I am having a housecleaner come in and deep clean (and then hopefully I can convince Eric to keep her coming every other week). I cleaned the house from top to bottom today. I have bought epsom salts to give her baths to keep toxins off and out of her. I am really REALLY getting into essential oils to help boost her immune system. And I am hoping that we will be vigilant this summer and into the school year. But I am terrified for illness. Strep was the catalyst that started us into the pits of hell, but now that her immune system has turned on her, it can be ANY illness that will catapult us right back where we were.
Is it getting better? Yes. Her behaviors aren't so severe and she seems happier. But her behaviors are still there. We are still trying to manage them. And in the meantime, I am in mourning. I am mourning the loss of the little girl that I thought I had. I am mourning what I thought our family of 5 was going to be like. I am mourning the fight we will have to fight and the battles we will lose... and hopefully win. I am mourning the sleep I used to get, and the stress I didn't have in life. I am mourning time I cannot spend with my boys because I am THE GO TO person for Catherine. I am mourning the carefree days of watching all three of my kids play with each other and eat ice cream. I am mourning, friends.
I am mourning. But I am rallying.
We will survive this. We will help others. We will learn to manage this. We will survive this. There is no other choice.
Until my next breakdown, cyberspace. Until next time.
My friend put it best last night - I am in mourning. First stage is denial, and there I sat after Catherine's diagnosis.
"Maybe it's not as bad as I thought."
"Maybe she's just slow."
"Maybe school will help more than we think."
"Maybe the doctor was wrong and it's something else."
And then there's:
"OH! A new word!"
"WOW! I've never seen her do that before."
"Oh lordy, she's hilarious."
And then there's:
"What if I hadn't breastfed her?"
"What if I had caught her constipation early?"
"What if I had been more demanding of the doctors?"
"What if I would have discovered this SOONER?"
It's gotten to the point where I second guess myself. I talk myself through all the viable options that we had, and there aren't any.
The toughest part is that people aren't quite understanding. My mom, God bless her, figureed that penicillin would fix it. I thought so too, at first. The more I am understanding, the more that I realize this is not fixable. And people don't understand that. People don't understand something you can't readily explain. Like another friend put it, this is not easily explained like diabetes or cancer or food allergies. This is a lengthy explanation. And even then, people still don't understand.
This isn't bad parenting. This isn't a misbehaved child. This isn't a problem we can fix. This isn't a girl who is overtired, or sad, or angry, or a "pistol." Her brain is literally being attacked.
I am seeking counseling, but even so, this blog has helped immensely. It helps me work through my issues and the what-if's and the what-now's. It helps me sort my thoughts out, make sense of them, and be able to face them head on. Just look at the post from Monday. Or better yet, take a look at the one before that. Ayeesh, talk about jumping off a cliff.
It helps me deal with Catherine. The late nights and the night-terrors and the lack of communication. The TEMPER TANTRUMS. God the temper tantrums.
There are so many symptoms that I don't know about, that I don't understand. There are test results that I am reading blindly, which I have no idea how to actually decipher. I am putting together a plan when there are no "plans" that work for every kid. You just have to keep trying, keep managing, keep staying ahead of the disease.
So here's the plan of action:
1) Fix her gut. Gut issues are a huge source of mental health issues, and right now, her gut is most likely the issue that is causing the most problems. So we need to fix the gut. Get healthy gut flora in and get the bad out. Fix the leaky gut. Most likely with dietary amendments, which will be time consuming and costly.
2) Fix her brain. We have her on an IEP for school. That will help IMMENSELY as many of these parents who fight this have to fight it alone. We have a teacher who knows the disease and has seen it in her own classroom. I am thankful for that.
3) Fix her speech. School will also help with that. Eric and I have decided to implement sign language. From what I understand, and what I have observed with Catherine, she has truble with auditory processing (understanding what we are saying to her) and how to verbalize it back. Interestingly enough, the words are in her brain. She just can't understand them, or use them. So I think sign language will help. We just have to figure out what words we need to use the most.
And before I list the things I am terrified about, let me say this: I am a mom. Moms who are worth a damn give a shit about their kid. So before anyone thinks about saying, "You can't let that rule your life, Laura," realize that if I don't think about these things now, Catherine may not have a hope.
So here are the things I am terrified about:
1) School. I am terrified that they will get Catherine on a good day, and she will ace all the tests that will ultimately take away her IEP.
2) Insurance: We are lucky that we have good insurance, but PANDAS is not really a recognized disease and we will have a fight against us. If we are able to get Catherine diagnosed with something other than PANDAS (i.e. autism, auditory processing disorder, ODD, OCD, Tourette's) we will be eligible for Medicare (possibly), which could give us a broader sweep of what would be covered. Beyond that, we would also be eligible for respite care. Not necessarily something I want to pursue as I think that Catherine needs social interaction, but at the same time, sometimes mom and dad justneed a break. And quite frankly, her brothers do too.
3) Her brothers. I worry that they will not understand Catherine. Eric and I talked about how important it is to be a tighter family unit. We do a lot of things as a family, but we also don't do a lot of things as a family. For example, Eric took all three kids on a bike ride on the 4th of July, and in the afternoon, I took James and Catherine to the pool. So although we are out doing things, we aren't doing it together. I am worried that they will reject Catherine (yeah, I know, doubtful, but I don't want them to become resentful of the attention that we have to give them).
4) Social life. Sounds stupid, but I want Catherine to have friends. Right now, she doesn't understand social cues, or when her "friends" want to settle down and stop wrestling on the floor. So she will hit them. I don't know how to fix that.
5) Potty-training. Also seems stupid, but I don't want her in diapers in Kindergarten. Although that's the way it's looking. Also, I just want to be fucking DONE with diapers. You can't fault me for that.
6) I Love You. I want her, so badly, to say I Love You to me. Seems selfish doesn't it? But nothing is better than when your child tells you they love you. She can't say it. What if she can never say it. I know, I know, she will tell me in other ways, but there is something about those words.
7) Illness. I am now terrified by it. I have a list of things we need to do as a family in regard to keeping the house clean. We are having the vents cleaned. I am having a housecleaner come in and deep clean (and then hopefully I can convince Eric to keep her coming every other week). I cleaned the house from top to bottom today. I have bought epsom salts to give her baths to keep toxins off and out of her. I am really REALLY getting into essential oils to help boost her immune system. And I am hoping that we will be vigilant this summer and into the school year. But I am terrified for illness. Strep was the catalyst that started us into the pits of hell, but now that her immune system has turned on her, it can be ANY illness that will catapult us right back where we were.
Is it getting better? Yes. Her behaviors aren't so severe and she seems happier. But her behaviors are still there. We are still trying to manage them. And in the meantime, I am in mourning. I am mourning the loss of the little girl that I thought I had. I am mourning what I thought our family of 5 was going to be like. I am mourning the fight we will have to fight and the battles we will lose... and hopefully win. I am mourning the sleep I used to get, and the stress I didn't have in life. I am mourning time I cannot spend with my boys because I am THE GO TO person for Catherine. I am mourning the carefree days of watching all three of my kids play with each other and eat ice cream. I am mourning, friends.
I am mourning. But I am rallying.
We will survive this. We will help others. We will learn to manage this. We will survive this. There is no other choice.
Until my next breakdown, cyberspace. Until next time.
Monday, July 3, 2017
The Deck: PANDAS Update #2
About 4 years ago, Eric and I built a massive 400 square foot deck off the back of our house. It spans the entire thing and is even big enough that it wraps around a tree. It's huge. We love it. We have so many family dinners around the table out there that our dining room table has collected a fine sheen of dust. Eric and I sit, so often, on the love seat, that the middle is starting to sag. Our deck makes our lives like a vacation. Constantly watching the kids play on it, enjoying the outdoors, being in the sunshine. It has also been the venue for many late-night conversations that Eric and I have had regarding Catherine. Last night was one of the most heart-wrenching.
Before last night, we had toed a line. Before last night, we had known there was something going on with Catherine and had acknowledged that it was going to take a lot of work to catch her up. Before last night, we were blissfully unaware of what we were truly dealing with.
Until Eric said, "Drew is quickly catching up to Catherine."
You probably don't think that it's that important of a phrase, but when he uttered it, neither of us said anything. He got up and paced the deck, and I sat and cried. He sat back down about 5 minutes later, and said, "Wow, that didn't hit me just how serious this was until I said that out loud."
And that's it. There are the things we have never said out loud. But last night, we said them.
Drew is already surpassing Catherine in several areas, but they are too subtle to notice. One in particular is articulation. Again, very subtle, but the fact that Drew can pronounce the word "Car" like "car" and Catherine says "cack" makes you wonder.
The fact that Drew understands to throw something away, and sometimes, Catherine doesn't understand that. She won't throw the piece of garbage in the trash, she will go put it on the stairs. But that's where the dirty laundry goes (like when Drew eats oranges and we have to take his shirt off directly after eating - it goes on the stairs until we go upstairs for the night and drop it in the laundry).
The fact that Drew understands the word diaper and when we ask him to get one, he does. Catherine never gets a diaper, she gets the wipes. And then she lays down. It's like she doesn't understand the word diaper.
Drew has almost as many words as Catherine, which seems remarkable as he is only 17 months old, but at the same time, he also has two older siblings that he watches day in and day out. I am sure he is at least a little ahead of the game. Not only that, but Drew can articulate them so clearly. We know exactly what Drew is saying. When Catherine asks if she is going on a walk in the stroller, she ays, "Me cack tee trow-wuh?" Yes, you are going on a walk in the stroller. It amazes me how much we can actually understand. When we ask her to repeat a word, she tries to repeat it, which is so much better than it was, but at the same time, it's sometimes nowhere near what we are actually saying. I asked her to say something today and what came out of her mouth didn't even have the same letters. It was bizarre.
So as Eric and I discovered what that phrase truly meant to us last night on the deck, we started writing things down. And we wrote things down for an hour and a half. For the psychiatrist who will hopefully help us through this at our first appointment next week. For our naturopath, who will hopefully help us through this at our first appointment, also next week. For our PANDAS doctor, who doesn't want to see us for another 3 months. For ourselves, so we can remember everything that we need to bring up at every appointment to try and enable a normal life for Catherine.
So here they are:
1) We feel like the processing is not there. She knows that the granola bars are in the cupboard with all the other snacks. So to let me know that she wants a snack, she says "bar?" When I take her to the cupboard, she doesn't want a bar, she wants another snack that's in there. However, she should be able to say "snack." She has the "ck" sound and she has the "sh" sound - so why can't she put it togehter?
2) Could the hitting actually be a tic? Sounds weird, but we talked extensively about how when she hits, it's like she disappears. Like the light goes out of her eyes. And that's what scares us the most. That's not normal. And as much as PANDAS is not normal, that is even more abnormal. It's like she leaves. And is this brought on by agitation? Very similar to split personality disorder in that whens he becomes overwhelmed, she checks out and someone else takes her place? Could that be why she doesn't seem to understand time-out?
3) Hugging: she will ask us for a hug at bedtime, but when either of us bends down and wraps our arms around her, her natural inclination is not to reciprocate. Instead, she just lays there. Which lead to our next discussion:
4) Mimicry. She mimics a lot. Most of her actions are not her actions, they are someone elses. When she talks on the phone, she mimics what she sees at daycare and at home. She mimics what she hears and how people communicate on the phone. Interestingly enough, the only time that I hear a different inflection and see a different part of her personality is when she is on the phone. Is the phone some sort of defense mechanism? On bad days, she seems to talk to whomever on the phone so much more than on good days. When she is agitated, is that her escape? But she doesn't always do it when she is agitated, she does it when she is in a good mood too, just not as much.
5) The cognitive piece just isn't there. I remember saying to her SLP last summer that it seems like she has really lost a lot of big pieces of learning. Some things are right where they need to be (throwing a ball, kicking a ball, dressing herself etc), but some things are not. At all. She does so many things inconsistently. Like she cannot access the knowledge that she has all the time. It's only some of the time. For example, she can tell me for a week straight what the color purple is, things that are purple, grabbing the purple cup etc. But the next week, she looks at me as if I have grown a second head. It's almost like she cannot understand what I am asking her to do ("grab the purple cup"). It's like she's a totally different person.
6) She is very inconsistently particular about things. There is no one thing that consistently sets Catherine off. One week, it can be that she has to have her puppy to sleep. This week, she could give two shits about the puppy and I hope that doesn't change because I have no idea where the damn thing went. She demands things that cause meltdowns that can last for hours one week, and the next week, she really could care less.
7) Sensory: there are a lot of sensory things that come to mind with Catherine. First off, she cannot stand being a little wet. She can immerse herself in the pool just fine (and she LOVES it!), but she cannot handle it if she spills water on herself at supper. She HAS to take off her shirt. She loves playing in the bathtub. She loves letting the water run over her hands when she is supposed to be washing them. She loves lotions and hand sanitizer and the feeling of being rubbed down by sunscreen. She rubs her blanket lightly and delicately when she is with her blanket, but furiously when she is agitated. When she is severely agitated, she puts it in her mouth.
8) She is fascinated by babies that are crying. And not in a good way. In the depths of my soul, this scares me a little. She will haul off and hit just about anyone, but it seems as though she is out to torment babies that are smaller than she is. She will hit and kick them, push them into things, yell at them. It's like she needs to have control over it. Beyond that, she loves to watch babies crying on YouTube. We have yet to switch all the tablets and old phones over to KidsTube, but I have noticed more and more that she likes watching videos of people crying. And not even sobbing. Wailing almost, like the individual is tormented. Babies crying at the sight of bubbles, or because they hate the bath. Older kids crying because their dad is coming at them while playing the Jaws theme on a tenor sax (and they are truly terrified).
9) Sometimes, it sounds like she is incredibly tormented. Especially her crying and tantrums. Like she wants to get out of her head, or get away from the body she is in. It's incredibly sad.
10) 4:00 is the witching hour. No matter how great of a morning or afternoon she has had, 4:00 starts the dilated pupils, followed by either extreme or slight ADHD, which is accompanied by little or no aggression (this is after a month of antibiotics, by the way), which is then followed by severe separation anxiety, where no matter what, she has to be WITH me. Sometimes it's very short-lived, but sometimes it can last all night and it. is. tough.
11) It's almost like she has poor muscle function. Like her muscles don't move in the way that she wants. Although she is starting to RUN, it is not fluid. It is smoother than it has been in the past, but there are still times when it seems like she just doesn't have the brain coordination to get her body to do what it needs to do. Beyond that, her hair is so thin and it seems like her bones are so brittle. Like she's frail. (We are hoping the nutritionist can help us with that)
Just these eleven things made us cross the line from where we were to where we are today. It took us awhile just to get through these four things. They were difficult to talk about, it made us sad for our daughter, and overall, it's just a super shitty situation. Here we are in the middle of a disease that manifests itself as something different in almost every single kid. Not to mention, with each subsequent illness that Catherine gets, the symptoms get worse. And then new symptoms appear as old ones go away, and it's always a guessing game.
I then posed the question, "What do we love about Catherine?"
We were silent for a long time. That was also a harsh reality. Here we were, two loving parents, talking about the child they created together in the eyes of God, and we can't even come up with what we fucking love about her?
It was nearly impossible, but Eric broke the ice, and from there, we realized that we loved her in ways we didn't know.
So here is what we came up with:
1) She is starting to be able to open up and actually RUN. Like, RUN. And it's not a weird loping like it has been in the past, it's an actual run. Her hair flying behind her, a smile on her face, RUNNING.
2) She LOVES swimming and I love that I can share that with her.
3) She LOVES dancing to music and listening to it, and I love that I can share that with her too.
4) She loves to cuddle in the mornings and I absolutely love cuddling with her. She's so small, she fits just right and it's the most amazing feeling. I will be sad when she grows out of that, but for now, I love cuddling with her.
5) She can be so concerned about other people. We definitely think that among the aggression there is a big heart.
We also came up with some random positives:
1) She is very in tune with other people. When she is not flaring, she is a GREAT helper. She loves playing dress up and doing very girly things that make her feel important.
2) She loves showing off her outfit of the day, even when she didn't help pick it out. It's hilarious. She will grab someones attention and then fluff her hair and rub her hands down her belly. HILARIOUS>
3) There is a sense of humor in there. Sometimes, she can be very funny. We think it's important to her that she be admired for things she can do well. I think the sense of humor will be that for her.
4) She likes praise, obviously.
5) She likes to have her picture taken (now that we have been on antibiotics for a month) and she is starting to take directions better. I don't have to tell her things several times.
6) She is SO motherly. She does everything I do when she gets her baby out. Puts the baby in teh stroller. Puts her purse on the handle. Walks her baby down the sidewalk. She is so independent when it comes to that. She loves playing pretend with her babies, which is totally normal (hallelujah!). She loves to put them down for a nap, complete with closing the door on them. She loves pushing the stroller and setting up food for them to eat. It's hilarious. i love it!
That hour and a half conversation last night took a lot out of us. We laughed, we cried, and we admitted that we are at the point where Catherine is not going to catch up. There. I said it. I really don't think she will. It's not a "woe is me" self-fulfilling prophecy, it's the hard reality of where we're at. Catherine operates at about an 18 month old. In most of her actions, thinking and speech. That isn't something that you cure, that's something that you manage.
And so here we are. Managing...
Last night, we acknowledged that Catherine is not easy to love, but we still love her, and there are some positives to our little girl that we have lost many nights' sleep over. But we are still forging forward. And I will continue to be the best damn mother to Catherine that I can.
Before last night, we had toed a line. Before last night, we had known there was something going on with Catherine and had acknowledged that it was going to take a lot of work to catch her up. Before last night, we were blissfully unaware of what we were truly dealing with.
Until Eric said, "Drew is quickly catching up to Catherine."
You probably don't think that it's that important of a phrase, but when he uttered it, neither of us said anything. He got up and paced the deck, and I sat and cried. He sat back down about 5 minutes later, and said, "Wow, that didn't hit me just how serious this was until I said that out loud."
And that's it. There are the things we have never said out loud. But last night, we said them.
Drew is already surpassing Catherine in several areas, but they are too subtle to notice. One in particular is articulation. Again, very subtle, but the fact that Drew can pronounce the word "Car" like "car" and Catherine says "cack" makes you wonder.
The fact that Drew understands to throw something away, and sometimes, Catherine doesn't understand that. She won't throw the piece of garbage in the trash, she will go put it on the stairs. But that's where the dirty laundry goes (like when Drew eats oranges and we have to take his shirt off directly after eating - it goes on the stairs until we go upstairs for the night and drop it in the laundry).
The fact that Drew understands the word diaper and when we ask him to get one, he does. Catherine never gets a diaper, she gets the wipes. And then she lays down. It's like she doesn't understand the word diaper.
Drew has almost as many words as Catherine, which seems remarkable as he is only 17 months old, but at the same time, he also has two older siblings that he watches day in and day out. I am sure he is at least a little ahead of the game. Not only that, but Drew can articulate them so clearly. We know exactly what Drew is saying. When Catherine asks if she is going on a walk in the stroller, she ays, "Me cack tee trow-wuh?" Yes, you are going on a walk in the stroller. It amazes me how much we can actually understand. When we ask her to repeat a word, she tries to repeat it, which is so much better than it was, but at the same time, it's sometimes nowhere near what we are actually saying. I asked her to say something today and what came out of her mouth didn't even have the same letters. It was bizarre.
So as Eric and I discovered what that phrase truly meant to us last night on the deck, we started writing things down. And we wrote things down for an hour and a half. For the psychiatrist who will hopefully help us through this at our first appointment next week. For our naturopath, who will hopefully help us through this at our first appointment, also next week. For our PANDAS doctor, who doesn't want to see us for another 3 months. For ourselves, so we can remember everything that we need to bring up at every appointment to try and enable a normal life for Catherine.
So here they are:
1) We feel like the processing is not there. She knows that the granola bars are in the cupboard with all the other snacks. So to let me know that she wants a snack, she says "bar?" When I take her to the cupboard, she doesn't want a bar, she wants another snack that's in there. However, she should be able to say "snack." She has the "ck" sound and she has the "sh" sound - so why can't she put it togehter?
2) Could the hitting actually be a tic? Sounds weird, but we talked extensively about how when she hits, it's like she disappears. Like the light goes out of her eyes. And that's what scares us the most. That's not normal. And as much as PANDAS is not normal, that is even more abnormal. It's like she leaves. And is this brought on by agitation? Very similar to split personality disorder in that whens he becomes overwhelmed, she checks out and someone else takes her place? Could that be why she doesn't seem to understand time-out?
3) Hugging: she will ask us for a hug at bedtime, but when either of us bends down and wraps our arms around her, her natural inclination is not to reciprocate. Instead, she just lays there. Which lead to our next discussion:
4) Mimicry. She mimics a lot. Most of her actions are not her actions, they are someone elses. When she talks on the phone, she mimics what she sees at daycare and at home. She mimics what she hears and how people communicate on the phone. Interestingly enough, the only time that I hear a different inflection and see a different part of her personality is when she is on the phone. Is the phone some sort of defense mechanism? On bad days, she seems to talk to whomever on the phone so much more than on good days. When she is agitated, is that her escape? But she doesn't always do it when she is agitated, she does it when she is in a good mood too, just not as much.
5) The cognitive piece just isn't there. I remember saying to her SLP last summer that it seems like she has really lost a lot of big pieces of learning. Some things are right where they need to be (throwing a ball, kicking a ball, dressing herself etc), but some things are not. At all. She does so many things inconsistently. Like she cannot access the knowledge that she has all the time. It's only some of the time. For example, she can tell me for a week straight what the color purple is, things that are purple, grabbing the purple cup etc. But the next week, she looks at me as if I have grown a second head. It's almost like she cannot understand what I am asking her to do ("grab the purple cup"). It's like she's a totally different person.
6) She is very inconsistently particular about things. There is no one thing that consistently sets Catherine off. One week, it can be that she has to have her puppy to sleep. This week, she could give two shits about the puppy and I hope that doesn't change because I have no idea where the damn thing went. She demands things that cause meltdowns that can last for hours one week, and the next week, she really could care less.
7) Sensory: there are a lot of sensory things that come to mind with Catherine. First off, she cannot stand being a little wet. She can immerse herself in the pool just fine (and she LOVES it!), but she cannot handle it if she spills water on herself at supper. She HAS to take off her shirt. She loves playing in the bathtub. She loves letting the water run over her hands when she is supposed to be washing them. She loves lotions and hand sanitizer and the feeling of being rubbed down by sunscreen. She rubs her blanket lightly and delicately when she is with her blanket, but furiously when she is agitated. When she is severely agitated, she puts it in her mouth.
8) She is fascinated by babies that are crying. And not in a good way. In the depths of my soul, this scares me a little. She will haul off and hit just about anyone, but it seems as though she is out to torment babies that are smaller than she is. She will hit and kick them, push them into things, yell at them. It's like she needs to have control over it. Beyond that, she loves to watch babies crying on YouTube. We have yet to switch all the tablets and old phones over to KidsTube, but I have noticed more and more that she likes watching videos of people crying. And not even sobbing. Wailing almost, like the individual is tormented. Babies crying at the sight of bubbles, or because they hate the bath. Older kids crying because their dad is coming at them while playing the Jaws theme on a tenor sax (and they are truly terrified).
9) Sometimes, it sounds like she is incredibly tormented. Especially her crying and tantrums. Like she wants to get out of her head, or get away from the body she is in. It's incredibly sad.
10) 4:00 is the witching hour. No matter how great of a morning or afternoon she has had, 4:00 starts the dilated pupils, followed by either extreme or slight ADHD, which is accompanied by little or no aggression (this is after a month of antibiotics, by the way), which is then followed by severe separation anxiety, where no matter what, she has to be WITH me. Sometimes it's very short-lived, but sometimes it can last all night and it. is. tough.
11) It's almost like she has poor muscle function. Like her muscles don't move in the way that she wants. Although she is starting to RUN, it is not fluid. It is smoother than it has been in the past, but there are still times when it seems like she just doesn't have the brain coordination to get her body to do what it needs to do. Beyond that, her hair is so thin and it seems like her bones are so brittle. Like she's frail. (We are hoping the nutritionist can help us with that)
Just these eleven things made us cross the line from where we were to where we are today. It took us awhile just to get through these four things. They were difficult to talk about, it made us sad for our daughter, and overall, it's just a super shitty situation. Here we are in the middle of a disease that manifests itself as something different in almost every single kid. Not to mention, with each subsequent illness that Catherine gets, the symptoms get worse. And then new symptoms appear as old ones go away, and it's always a guessing game.
I then posed the question, "What do we love about Catherine?"
We were silent for a long time. That was also a harsh reality. Here we were, two loving parents, talking about the child they created together in the eyes of God, and we can't even come up with what we fucking love about her?
It was nearly impossible, but Eric broke the ice, and from there, we realized that we loved her in ways we didn't know.
So here is what we came up with:
1) She is starting to be able to open up and actually RUN. Like, RUN. And it's not a weird loping like it has been in the past, it's an actual run. Her hair flying behind her, a smile on her face, RUNNING.
2) She LOVES swimming and I love that I can share that with her.
3) She LOVES dancing to music and listening to it, and I love that I can share that with her too.
4) She loves to cuddle in the mornings and I absolutely love cuddling with her. She's so small, she fits just right and it's the most amazing feeling. I will be sad when she grows out of that, but for now, I love cuddling with her.
5) She can be so concerned about other people. We definitely think that among the aggression there is a big heart.
We also came up with some random positives:
1) She is very in tune with other people. When she is not flaring, she is a GREAT helper. She loves playing dress up and doing very girly things that make her feel important.
2) She loves showing off her outfit of the day, even when she didn't help pick it out. It's hilarious. She will grab someones attention and then fluff her hair and rub her hands down her belly. HILARIOUS>
3) There is a sense of humor in there. Sometimes, she can be very funny. We think it's important to her that she be admired for things she can do well. I think the sense of humor will be that for her.
4) She likes praise, obviously.
5) She likes to have her picture taken (now that we have been on antibiotics for a month) and she is starting to take directions better. I don't have to tell her things several times.
6) She is SO motherly. She does everything I do when she gets her baby out. Puts the baby in teh stroller. Puts her purse on the handle. Walks her baby down the sidewalk. She is so independent when it comes to that. She loves playing pretend with her babies, which is totally normal (hallelujah!). She loves to put them down for a nap, complete with closing the door on them. She loves pushing the stroller and setting up food for them to eat. It's hilarious. i love it!
That hour and a half conversation last night took a lot out of us. We laughed, we cried, and we admitted that we are at the point where Catherine is not going to catch up. There. I said it. I really don't think she will. It's not a "woe is me" self-fulfilling prophecy, it's the hard reality of where we're at. Catherine operates at about an 18 month old. In most of her actions, thinking and speech. That isn't something that you cure, that's something that you manage.
And so here we are. Managing...
Last night, we acknowledged that Catherine is not easy to love, but we still love her, and there are some positives to our little girl that we have lost many nights' sleep over. But we are still forging forward. And I will continue to be the best damn mother to Catherine that I can.
Tuesday, June 27, 2017
P.A.N.D.A.S. Journey: Update #1
As I write this, I am drinking a glass of wine. Well-deserved, I would say.
I cried in front of my daycare provider today. I felt pretty stupid. I am starting to very slooooowly rally, but it still sucks. When we have great nights, followed by awful mornings, it makes me wonder how long I can survive this roller coaster. I mean, I can't hardly stand to leave the ground. I have to mentally talk myself out of a panic attack when we hit turbulence on an airplane. I lose my shit on th Tilt-a-Whirl, for God's sake.
I called our PANDAS doctor yesterday, about Catherine ear infection. Or the ear infection that is just beginning. They called me back about 3:00 and pretty much said: YAY the penicillin will work for Catherine and SORRY, the tics worsening is just part of the disease and OH NO, she has another ear infection? Call the ENT.
I called the ENT, but since he's new and I don't know what I am doing, I got the voice message system "too late." So if you call after 3:00, you cannot leave a message. You have to call back the next day. Umm, seriously?
So, I call this morning. Again, only about a possible ear infection. The nurse tells me the ENT doctor is OUT OF THE COUNTRY right now, and won't be back for a couple of weeks. So I should call my primary care physician. Are you fucking serious?
So three phone calls, and two days later, I have NO CALL BACK. No wonder people skip the doctor and go right to Urgent Care, which I may just do tomorrow.
Otherwise, I had a really great phone conversation with a now-friend of mine. I say now-friend, because before, she was my bosses wife. And now, this shitty disease has united us. We are meeting for dinner on Thursday night, with another PANDAS mom. Side note: doesn't "PANDAS mom" sound so cute? It's not.
From here, I am learning all sorts of new things. Herxing, and blood-brain barrier, and Bartonella, and mycoplasma, and co-infections. It's loads of fun. Hence, the glass of wine.
My now-friend told me the other night that she has pretty much had to piecemeal everything together.
There are doctors who have never heard of it. Don't go to them.
There are doctors who have heard of it. Don't go to them either.
There are doctors who have heard of it, and have patients with it, but they have been referred elsewhere, so don't go to them.
There are doctors who have heard of it, seen it, and try to treat it with ONE remedy. ONE. Which usually doesn't work. Don't go to them either.
There are doctors who have heard of it, seen it, have tried to treat it a couple of different ways, and keep searching for answers. Try to see them.
There are doctors who have heard of it, seen it, tried to treat it several ways, and are now on one of two boards in the country as leading "PANDAS" researchers and doctors. If you go to them, they will use you as an experiment and ask you to document behaviors nine million times a day. I am sure my day care provider would LOVE that. My checkbook would also LOVE a trip to a doctor that is out-of-network. Or better yet, not covered.
There is a doctor in Missouri who is one of the leading researchers in the Nation regarding PANDAS, who IS in-network. His wait-list, as I found out when I called, is THREE MONTHS OUT. Better yet, he's not accepting new patients. So I need a referral. FUCKING REFERRALS. My whole life with Catherine has been a referral. Do this, do that, try this, try that, she's too young, it's not her ears. BLAH BLAH BLAH.
I called the naturopathic doctor back on Monday, who I was impressed with when she called last Tuesday. Eric and I decided that we would try it. Who knows? Maybe it will work? I know they do a ton more testing than regular doctors, which seems really backwards to me. $400 for two appointments. Not terrible. We will fork it out. I don't want to think what it will be for the testing, but this is also my baby girl. She's a little more important than cash.
I have joined what feels like a thousand PANDAS groups. It seems rash, but when there is hardly anything out in the medical field about this relatively new disease, I want to know what other moms are experiencing. I want to know what other mothers are facing. Of course, none of them have positive, feel-good stories. All of them have, "This med stopped working - what now?" stories. It's heartbreaking, but it's good to face reality as well. This is what we have to look forward to. As one doctor put it, there is no cure, only management.
So we will manage the shit out of this. I will rally, once I get my shit together (any day now, would be nice). I will be the voice for Catherine because she hasn't had one. I will love her unconditionally, and fight for her twice as hard.
Catherine has a picture that I painted above her bed that says, "Decide what to be, and go be it." So i will be the best damn mother I can be for Catherine. THE BEST. Good thing I was born with horns and a tiara.
I cried in front of my daycare provider today. I felt pretty stupid. I am starting to very slooooowly rally, but it still sucks. When we have great nights, followed by awful mornings, it makes me wonder how long I can survive this roller coaster. I mean, I can't hardly stand to leave the ground. I have to mentally talk myself out of a panic attack when we hit turbulence on an airplane. I lose my shit on th Tilt-a-Whirl, for God's sake.
I called our PANDAS doctor yesterday, about Catherine ear infection. Or the ear infection that is just beginning. They called me back about 3:00 and pretty much said: YAY the penicillin will work for Catherine and SORRY, the tics worsening is just part of the disease and OH NO, she has another ear infection? Call the ENT.
I called the ENT, but since he's new and I don't know what I am doing, I got the voice message system "too late." So if you call after 3:00, you cannot leave a message. You have to call back the next day. Umm, seriously?
So, I call this morning. Again, only about a possible ear infection. The nurse tells me the ENT doctor is OUT OF THE COUNTRY right now, and won't be back for a couple of weeks. So I should call my primary care physician. Are you fucking serious?
So three phone calls, and two days later, I have NO CALL BACK. No wonder people skip the doctor and go right to Urgent Care, which I may just do tomorrow.
Otherwise, I had a really great phone conversation with a now-friend of mine. I say now-friend, because before, she was my bosses wife. And now, this shitty disease has united us. We are meeting for dinner on Thursday night, with another PANDAS mom. Side note: doesn't "PANDAS mom" sound so cute? It's not.
From here, I am learning all sorts of new things. Herxing, and blood-brain barrier, and Bartonella, and mycoplasma, and co-infections. It's loads of fun. Hence, the glass of wine.
My now-friend told me the other night that she has pretty much had to piecemeal everything together.
There are doctors who have never heard of it. Don't go to them.
There are doctors who have heard of it. Don't go to them either.
There are doctors who have heard of it, and have patients with it, but they have been referred elsewhere, so don't go to them.
There are doctors who have heard of it, seen it, and try to treat it with ONE remedy. ONE. Which usually doesn't work. Don't go to them either.
There are doctors who have heard of it, seen it, have tried to treat it a couple of different ways, and keep searching for answers. Try to see them.
There are doctors who have heard of it, seen it, tried to treat it several ways, and are now on one of two boards in the country as leading "PANDAS" researchers and doctors. If you go to them, they will use you as an experiment and ask you to document behaviors nine million times a day. I am sure my day care provider would LOVE that. My checkbook would also LOVE a trip to a doctor that is out-of-network. Or better yet, not covered.
There is a doctor in Missouri who is one of the leading researchers in the Nation regarding PANDAS, who IS in-network. His wait-list, as I found out when I called, is THREE MONTHS OUT. Better yet, he's not accepting new patients. So I need a referral. FUCKING REFERRALS. My whole life with Catherine has been a referral. Do this, do that, try this, try that, she's too young, it's not her ears. BLAH BLAH BLAH.
I called the naturopathic doctor back on Monday, who I was impressed with when she called last Tuesday. Eric and I decided that we would try it. Who knows? Maybe it will work? I know they do a ton more testing than regular doctors, which seems really backwards to me. $400 for two appointments. Not terrible. We will fork it out. I don't want to think what it will be for the testing, but this is also my baby girl. She's a little more important than cash.
I have joined what feels like a thousand PANDAS groups. It seems rash, but when there is hardly anything out in the medical field about this relatively new disease, I want to know what other moms are experiencing. I want to know what other mothers are facing. Of course, none of them have positive, feel-good stories. All of them have, "This med stopped working - what now?" stories. It's heartbreaking, but it's good to face reality as well. This is what we have to look forward to. As one doctor put it, there is no cure, only management.
So we will manage the shit out of this. I will rally, once I get my shit together (any day now, would be nice). I will be the voice for Catherine because she hasn't had one. I will love her unconditionally, and fight for her twice as hard.
Catherine has a picture that I painted above her bed that says, "Decide what to be, and go be it." So i will be the best damn mother I can be for Catherine. THE BEST. Good thing I was born with horns and a tiara.
Monday, June 19, 2017
Oh, My Heart
My heart is hurting, friends.
Tonight, Catherine had a tic so bad, that lasted so long, she spilled her plate of food, which contained ketchup, all over herself.
She was distraught afterward. Since I have been google researching the shit out of this disease, I have learned a ton. And all of a sudden, Catherine makes sense.
Before, we had used the canned terms brat, possessed, and out-of-control. Now, I use the term PANDAS.
It's a fine line to walk. She's three. She also exhibits typical threenager behaviors. But on the other hand, she has something else that is attacking her brain, causing her to act differently at the drop of a hat. If you think about it, antibodies are constantly moving. So from day-to-day, Catherine can exhibit different behaviors. I made a video today, for a Facebook page I am making to hopefully help others that are deep into this hell like we are, and I just hit record and talked. For 45 minutes. I didn't really have anything planned, I just started at the beginning. For 45 minutes, I talked, and at one point, I equated what was happening to our family to emotional abuse. The abuser will say horrible things, and then the next minute, tell you they love you and they don't want you to go. It is a constant up and down. This is life with Catherine.
Today, Catherine's tic was so horrifying to watch, my heart physically hurt. I had to get up from the dinner table and compose myself in the bathroom.
I am a classified pity-partier for about 24 hours. If something terrible happens, I allow myself to be upset about it, but after that 24 hours, I rally. And I usually rally hard. I think Catherine's story is proof of that. Every frustrating doctors appointment, I would feel terrible that no one seemed to be helping us. But then I would rally. Maybe it's this, or maybe it's that. I never imagined it would actually be something like THIS. I never imagined that THAT would be the cause of all of our emotional and physical turmoil. As parents. As a family. And especially, for Catherine.
But I have not rallied. As each day goes on and I notice symptoms of this disease that I had not noticed before, or had thought of as "weird," I now know it is not Catherine's fault. That's what makes this difficult.
One of the symptoms is "emotional lability." I know what those words mean, but I could not for the life of me, understand what that would look like. I finally saw it today. She was walking her stroller around the cul-de-sac, happy as a lark, and the next second, she was demanding that I pick her up and carry her inside. We were 20 feet from our front door. She kept crying, "puppy, cold" meaning she wanted her puppy and her blanket. I told her to walk inside and get it. It was like she couldn't bring herself to go inside. She threw a massive temper tantrum and from there, I picked her up and walked her inside. I couldn't help it. This is my little girl.
Once situated on the couch, she calmed down and BOOM, it was like someone threw the switch and she was happy as a lark again.
Another symptom is severe anxiety, including separation anxiety. She is obsessed with where I am all the time. She throws tantrums like none other when I have to go out to my car to get something. If I am in the other room, she needs to know I am there and will physically check on me. If she wants me to sit on the couch with her, and I don't, she goes into hysterics. Again, it's like that emotional abuser component of it. I need my time too. I need a place to go where it's quiet, away from the kids every once in awhile. But every second that I am home and Catherine is there, she is with me every step of the way.
Another symptom is the tics. Think: Tourette's syndrome. The hitting, swearing, head twisting kind. This is Catherine. Tonight, she shook her head back and forth, looked down and to the right while opening her mouth wide, then gave a facial grimace, and then shook her shoulders up and down. This caused her to spill her plate. It was maybe 4 seconds long, but as I watched it happen while everyone else was playing in the yard, I was shocked. This was happening right before my eyes and there is nothing I can do about it.
Since our diagnosis, I have talked to a few friends. "What I read about it, penicillin cures it, doesn't it?"
No. Penicillin is a bandaid. It lessens the effects because it does the work for the antibodies. So the antibodies chill out a little bit. This also causes them to die off, bringing her strep titres down. What is going on with Catherine is an immune overreaction to illness. Penicillin does not help the immune system. It helps stave off what the immune system reacts to. But that is not a guaranteed. It is not a for-sure thing that will cure Catherine.
I have watched countless websites, read countless articles, and have slept a total of 4-5 hours a night, because I am up so late researching and searching for other parents out there. I have connected with parents from California, New York and even right here in Des Moines. With the parents in Des Moines, it seems the only doctor who acknowledges it and treats it, treats it with penicillin. And behavior therapy. And a psychiatrist who dopes up their kids. I don't want Catherine on Ativan, or anti-psychotics, or mood suppressants. I want her to be a little girl.
I am at war with myself. On one hand, what if Penicillin is the trick? What if that really helps Catherine? But what if it doesn't? Then it's another year on pencillin. And then it doesn't clear up again? Another year. But modern medicine isn't always that great. It can wreak havoc on your body, and from the parents who had their kids on long-term penicillin, it messed with their white blood cell count so terribly, their children actually got more sick. MORE SICK. One parent I connected with said they are on year 5, with not a lot of hope in sight. Each time her kid gets sick, the symptoms come back even worse than the time before. And each time, they treat with antibiotics, and her kid gets "better." But not actually "better," just an improved version. Not a healed version.
I connected with another mom in New York, whose son went undiagnosed for EIGHT YEARS. Eight! She said she had exhausted all her resources, had gone to every pediatrician, and no one had diagnosed it. Finally, she and her husband went completely off the wire and contacted a homeopath. In the first appointment, the homeopath diagnosed her son. In the second, she created a timeline of events. In the third, she prescribed Bella Donna. If you're familiar with it, it can kill you. Read: it's poisonous to the point of simply stopping your heart. He takes one dose once every four weeks. She said the other day she finally "met" her son for the first time. And he is sweet and charming and has a sense of humor. And he SMILES! She said life is so much better after the diagnosis 10 weeks ago, she could scream it from the mountain tops. I only hope I can do the same for Catherine.
So I researched Naturopathy and Homeopathy, and looked into what insurance covers.
NOTHING. Insurance covers nothing. This would be all out of pocket.
Thank God for savings, right?
So do we want to chance the penicillin, which is a $10 co-pay for each visit and prescription refill? But it might not even work? Or do we want to seek out a Naturopathic doctor and shell out thousands of dollars for something that we aren't even really sure about?
The more I think about it, the more I don't want Catherine on medications. She has been on meds for several years, just as simple as basic antibiotics and Miralax. But at the same time, what if it doesn't work? We will have put that into her body for nothing?
I am frustrated. I am exasperated. I am really, really, REALLY sad. This is my kid. You only want the best for your kid. You only want your kid to have a normal life. You only want your kid to have a bright future. Right now, that is not looking good for Catherine. Remember, each time they get sick again, the symptoms come back two-fold. But your'e thinking, "It's P for pediatric right?" Wrong. It's P for Pediatric, because no one has really studied it past the age of 14.
So think of where we will be in a couple of years? A decade? Catherine will be thirteen and in middle school. And middle school sucks for girls. SUCKS. I can't imagine having a facial grimace tic and a strange humming tic in middle school, let alone trying to find your place in the world.
My heart hurts, friends. It hurts for my little girl, who I, too, have never really met. It hurts for my family, and especially James, who doesn't understand why Catherine flies off the handle. It hurts for Drew, who loves playing with her, but is shocked when she hauls off an hits him. It hurts for me, for trying to navigate this crazy disease. It hurts for Eric, who is trying to keep us all together.
It hurts. I hurt. I love my daughter, and James and Drew, more than life itself. I cannot imagine life without them. But I can't imagine life with this disease. When we go to the doctor, we are ill. We get a prescription, we take it, we get better. That's not the case here. This isn't fatal. It won't kill her. But she might not come back from this. I may never actually know who she is.
I am humble enough to say I am no doctor, but I am also smart enough to know that this is not going to be easy. When we got a diagnosis, I thought, "YES! THIS IS IT!" And then I began researching. And I began to hear horror stories. The doctors tell me to stay off the internet. This doctor? He told me to research everything I could. He said it is not a well-known disease, and symptoms manifest themselves in dozens of ways. So, research I did. Maybe because he didn't want to tell me this is not going to be a good thing for our family?
This disease causes anorexia, homicidal thoughts, suicidal thoughts, hallucinations, tics, ADHD symptoms, OCD symptoms, ODD symptoms. This disease robs me of my baby girl.
Maybe I will go live with my Facebook page, maybe I won't. I started it as an outlet, much like this one. But I don't want to share this blog with many. I would rather keep it close to my heart. Because like anyone who is vulnerable, I don't want to share this. I want to share the help I am seeking for my little girl, in order to help someone else. I want to document all the things on Facebook in a much easier way than a fricken google document. I want someone to trip over my page and say, "YES, THIS IS MY KID TOO!" Catherine is at the very, VERY beginning of the "age of onset" in the eyes of doctors. But I firmly believe it started with the ear infections when she was 18 months. I wonder how many others, most likely with an autistic diagnosis, are actually PANDAS kids? On my Facebook page, it's told through her eyes. Her eyes told the story of a very sick little girl. The eyes started when she was 18 months old. They are glossy with dilated pupils. Add in the constant moving and tics, she looks like a tweaker. And it all started, overnight, with her eyes.
I am scared. I am tired. I am beaten. I am worn.
Pray for us, friends. Pray for us.
Tonight, Catherine had a tic so bad, that lasted so long, she spilled her plate of food, which contained ketchup, all over herself.
She was distraught afterward. Since I have been google researching the shit out of this disease, I have learned a ton. And all of a sudden, Catherine makes sense.
Before, we had used the canned terms brat, possessed, and out-of-control. Now, I use the term PANDAS.
It's a fine line to walk. She's three. She also exhibits typical threenager behaviors. But on the other hand, she has something else that is attacking her brain, causing her to act differently at the drop of a hat. If you think about it, antibodies are constantly moving. So from day-to-day, Catherine can exhibit different behaviors. I made a video today, for a Facebook page I am making to hopefully help others that are deep into this hell like we are, and I just hit record and talked. For 45 minutes. I didn't really have anything planned, I just started at the beginning. For 45 minutes, I talked, and at one point, I equated what was happening to our family to emotional abuse. The abuser will say horrible things, and then the next minute, tell you they love you and they don't want you to go. It is a constant up and down. This is life with Catherine.
Today, Catherine's tic was so horrifying to watch, my heart physically hurt. I had to get up from the dinner table and compose myself in the bathroom.
I am a classified pity-partier for about 24 hours. If something terrible happens, I allow myself to be upset about it, but after that 24 hours, I rally. And I usually rally hard. I think Catherine's story is proof of that. Every frustrating doctors appointment, I would feel terrible that no one seemed to be helping us. But then I would rally. Maybe it's this, or maybe it's that. I never imagined it would actually be something like THIS. I never imagined that THAT would be the cause of all of our emotional and physical turmoil. As parents. As a family. And especially, for Catherine.
But I have not rallied. As each day goes on and I notice symptoms of this disease that I had not noticed before, or had thought of as "weird," I now know it is not Catherine's fault. That's what makes this difficult.
One of the symptoms is "emotional lability." I know what those words mean, but I could not for the life of me, understand what that would look like. I finally saw it today. She was walking her stroller around the cul-de-sac, happy as a lark, and the next second, she was demanding that I pick her up and carry her inside. We were 20 feet from our front door. She kept crying, "puppy, cold" meaning she wanted her puppy and her blanket. I told her to walk inside and get it. It was like she couldn't bring herself to go inside. She threw a massive temper tantrum and from there, I picked her up and walked her inside. I couldn't help it. This is my little girl.
Once situated on the couch, she calmed down and BOOM, it was like someone threw the switch and she was happy as a lark again.
Another symptom is severe anxiety, including separation anxiety. She is obsessed with where I am all the time. She throws tantrums like none other when I have to go out to my car to get something. If I am in the other room, she needs to know I am there and will physically check on me. If she wants me to sit on the couch with her, and I don't, she goes into hysterics. Again, it's like that emotional abuser component of it. I need my time too. I need a place to go where it's quiet, away from the kids every once in awhile. But every second that I am home and Catherine is there, she is with me every step of the way.
Another symptom is the tics. Think: Tourette's syndrome. The hitting, swearing, head twisting kind. This is Catherine. Tonight, she shook her head back and forth, looked down and to the right while opening her mouth wide, then gave a facial grimace, and then shook her shoulders up and down. This caused her to spill her plate. It was maybe 4 seconds long, but as I watched it happen while everyone else was playing in the yard, I was shocked. This was happening right before my eyes and there is nothing I can do about it.
Since our diagnosis, I have talked to a few friends. "What I read about it, penicillin cures it, doesn't it?"
No. Penicillin is a bandaid. It lessens the effects because it does the work for the antibodies. So the antibodies chill out a little bit. This also causes them to die off, bringing her strep titres down. What is going on with Catherine is an immune overreaction to illness. Penicillin does not help the immune system. It helps stave off what the immune system reacts to. But that is not a guaranteed. It is not a for-sure thing that will cure Catherine.
I have watched countless websites, read countless articles, and have slept a total of 4-5 hours a night, because I am up so late researching and searching for other parents out there. I have connected with parents from California, New York and even right here in Des Moines. With the parents in Des Moines, it seems the only doctor who acknowledges it and treats it, treats it with penicillin. And behavior therapy. And a psychiatrist who dopes up their kids. I don't want Catherine on Ativan, or anti-psychotics, or mood suppressants. I want her to be a little girl.
I am at war with myself. On one hand, what if Penicillin is the trick? What if that really helps Catherine? But what if it doesn't? Then it's another year on pencillin. And then it doesn't clear up again? Another year. But modern medicine isn't always that great. It can wreak havoc on your body, and from the parents who had their kids on long-term penicillin, it messed with their white blood cell count so terribly, their children actually got more sick. MORE SICK. One parent I connected with said they are on year 5, with not a lot of hope in sight. Each time her kid gets sick, the symptoms come back even worse than the time before. And each time, they treat with antibiotics, and her kid gets "better." But not actually "better," just an improved version. Not a healed version.
I connected with another mom in New York, whose son went undiagnosed for EIGHT YEARS. Eight! She said she had exhausted all her resources, had gone to every pediatrician, and no one had diagnosed it. Finally, she and her husband went completely off the wire and contacted a homeopath. In the first appointment, the homeopath diagnosed her son. In the second, she created a timeline of events. In the third, she prescribed Bella Donna. If you're familiar with it, it can kill you. Read: it's poisonous to the point of simply stopping your heart. He takes one dose once every four weeks. She said the other day she finally "met" her son for the first time. And he is sweet and charming and has a sense of humor. And he SMILES! She said life is so much better after the diagnosis 10 weeks ago, she could scream it from the mountain tops. I only hope I can do the same for Catherine.
So I researched Naturopathy and Homeopathy, and looked into what insurance covers.
NOTHING. Insurance covers nothing. This would be all out of pocket.
Thank God for savings, right?
So do we want to chance the penicillin, which is a $10 co-pay for each visit and prescription refill? But it might not even work? Or do we want to seek out a Naturopathic doctor and shell out thousands of dollars for something that we aren't even really sure about?
The more I think about it, the more I don't want Catherine on medications. She has been on meds for several years, just as simple as basic antibiotics and Miralax. But at the same time, what if it doesn't work? We will have put that into her body for nothing?
I am frustrated. I am exasperated. I am really, really, REALLY sad. This is my kid. You only want the best for your kid. You only want your kid to have a normal life. You only want your kid to have a bright future. Right now, that is not looking good for Catherine. Remember, each time they get sick again, the symptoms come back two-fold. But your'e thinking, "It's P for pediatric right?" Wrong. It's P for Pediatric, because no one has really studied it past the age of 14.
So think of where we will be in a couple of years? A decade? Catherine will be thirteen and in middle school. And middle school sucks for girls. SUCKS. I can't imagine having a facial grimace tic and a strange humming tic in middle school, let alone trying to find your place in the world.
My heart hurts, friends. It hurts for my little girl, who I, too, have never really met. It hurts for my family, and especially James, who doesn't understand why Catherine flies off the handle. It hurts for Drew, who loves playing with her, but is shocked when she hauls off an hits him. It hurts for me, for trying to navigate this crazy disease. It hurts for Eric, who is trying to keep us all together.
It hurts. I hurt. I love my daughter, and James and Drew, more than life itself. I cannot imagine life without them. But I can't imagine life with this disease. When we go to the doctor, we are ill. We get a prescription, we take it, we get better. That's not the case here. This isn't fatal. It won't kill her. But she might not come back from this. I may never actually know who she is.
I am humble enough to say I am no doctor, but I am also smart enough to know that this is not going to be easy. When we got a diagnosis, I thought, "YES! THIS IS IT!" And then I began researching. And I began to hear horror stories. The doctors tell me to stay off the internet. This doctor? He told me to research everything I could. He said it is not a well-known disease, and symptoms manifest themselves in dozens of ways. So, research I did. Maybe because he didn't want to tell me this is not going to be a good thing for our family?
This disease causes anorexia, homicidal thoughts, suicidal thoughts, hallucinations, tics, ADHD symptoms, OCD symptoms, ODD symptoms. This disease robs me of my baby girl.
Maybe I will go live with my Facebook page, maybe I won't. I started it as an outlet, much like this one. But I don't want to share this blog with many. I would rather keep it close to my heart. Because like anyone who is vulnerable, I don't want to share this. I want to share the help I am seeking for my little girl, in order to help someone else. I want to document all the things on Facebook in a much easier way than a fricken google document. I want someone to trip over my page and say, "YES, THIS IS MY KID TOO!" Catherine is at the very, VERY beginning of the "age of onset" in the eyes of doctors. But I firmly believe it started with the ear infections when she was 18 months. I wonder how many others, most likely with an autistic diagnosis, are actually PANDAS kids? On my Facebook page, it's told through her eyes. Her eyes told the story of a very sick little girl. The eyes started when she was 18 months old. They are glossy with dilated pupils. Add in the constant moving and tics, she looks like a tweaker. And it all started, overnight, with her eyes.
I am scared. I am tired. I am beaten. I am worn.
Pray for us, friends. Pray for us.
Tuesday, June 13, 2017
P.A.N.D.A.S.
We had our appointment at the Pediatric Diagnostic Clinic. But first, a preface:
At our last pediatric appointment, with our NEW pediatrician, I got a call saying that Catherine's strep titres were the highest they had ever seen at their clinic. Strep titres are essentially the antibodies our bodies produce to get rid of, yep, you guessed it, Group A Strep and subsequent strep infections (I guess they go all the way up to H?). That didn't really surprise me since Catherine had had Group A Strep a couple of weeks before having the test. However, it did surprise me that it was "so high" after two weeks of antibiotics (with three ear infections on those antibiotics).
Then came last Thursday, when Catherine had her 3 year Well Child Check. I explained to our old pediatrician (who I think we will stay with for the time being - she DOES know our family really well and finally seems to be listening) that Catherine had been doing so well since her dose of antibiotics. I was very excited about it but 1) I was discouraged as that would mean the Pediatric Diagnostic Clinic would not see Catherine at her worst (I spoke WAY too soon on that one), and 2) I was simply waiting for the next shoe to drop. Meaning, I knew it wasn't going to last long (called that one).
No sooner than the next day did Catherine start to plunge back into the hell that is whatever it is that is plaguing her. Frequent outbursts, inconsolable temper tantrums, very aggressive, separation anxiety and frequent "humming" which we now know are her tics.
Saturday and Sunday were nightmares. Monday came and guiltily, I dropped Catherine off at daycare and enjoyed my day, sans nightmare. James and I hung out, and I anxiously gathered things in preparation for today's appointment.
It's embarrassing to say, but I nearly cried through Catherine's entire appointment. However, I have to say that the staff at Blank Children's Hospital is awesome, and they made me feel like a normal, concerned mom, rather than a crazy person with a possible diagnosis of Munchausen Syndrome by Proxy.
Essentially, I sent Catherine's running google doc to the doctor for him to look it over before I got there. I knew I was going to be a mess, and I knew that in that anxiety-fueled mess I would forget things. So I sent it to them. The biggest thing that stuck out to me: ALL of them read it. The nurse read it, the Resident read it, Dr. Elliot read it. BEFORE I got there. And then they wrote down all the questions they had for me, which made the appointment much shorter than I thought it was going to be.
Catherine was none-too-thrilled to be there, and when we got there, she immediately registered a fever. WHAT? Then I laughed. I had even said to a friend the other night that I bet within the week Catherine had an ear infection. For her to have a fever, I was almost right on the money, although it showed up a few days earlier than my prediction. Nevertheless, I was right. Because I know my daughter.
So we were whisked away to a waiting room where they brought her toys and just like that, she started lining them up. Not playing with them, but lining them up. Certain toys had to go certain places. When I picked up a My Little Pony to play with her, she threw a fit. Score one for mom - the doctor was going to be able to see Catherine nearly at her worst. In looking in her ears, she nearly kicked herself out of my arms. This wasn't a kid who didn't want to be there. This was an uncontrollable, instinctual urge to throw herself out of my arms. She nearly succeeded. Looking in her ears does not hurt, and she knows that. But she fought it with everything she had.
Dr. Elliot, the resident (I cannot remember his name for the life of me), and Nurse Anne were so patient with her. The gist of all of it was that Catherine does indeed, have PANDAS (Pediatric Acute-Onset Neuropsychiatric Disease Associated with Strep). Essentially, it's an autoimmune disorder where Catherine's immune system overreacts to every illness. Mostly, strep. So her body builds a ton of antibodies to ward off the infection. Unfortunately, strep is a molecular mimicry bacteria, and for whatever reason, these antibodies will start attacking the brain. Mainly, the basal ganglia, which is responsible for behaviors. What strikes me is that chemicals that cross the central nervous system, can exacerbate symptoms. Cue Zyrtec. And food dyes.
Most of the behaviors manifest themselves as severe ADHD, OCD, ODD (oppositional defiance disorder) and children will have "tics." Not to mention the anxiety that goes along with all of that, particularly separation anxiety. The awesome thing (read: shitty) about all of this is that the tics can be so different from one kid to the next. But Catherine's is humming. The worse she is, the more humming she does and the less speech she has. ADHD and OCD have such wide-ranging criteria that it's hard to figure out that when Catherine lines her toys up, or when she has her baby JUST SO in her stroller, that is OCD. ADHD is her fidgeting. All. The. Time. We call it rapid toddler adjusting. She just cannot sit still. I think the reason she loves to dance is because it allows her to get her wiggles out. This also manifests itself as jerky movements. Cue Catherine's dancing again. Emotional lability (think schizophrenic) with a tendency to have wide-arching emotions (Catherine to a T), is even more of a tell-tale sign of PANDAS. But all of these symptoms HAVE to include the elevated strep titres. Not to mention, all of these go away when on antibiotics. Cue Catherine's antibiotic diagnostic test almost three weeks ago.
Combine these symptoms with elevated strep titres, plus observing the behavior over periods of time (thank GOD that I had the sense to start a google doc), and viola. PANDAS.
The even MORE awesome thing (read: shitty) is that with PANDAS, you're on a roller coaster and each dip in the tracks gets deeper and deeper. Meaning once the strep infection is gone, there are still antibodies left. Cue another strep infection, and you can have twice as many antibodies as you did before. Meaning worsened behaviors. This is exactly what we have seen in Catherine since she was 18 months old. It started out with good days and bad days. Then it was good weeks and bad weeks. I can now say we have survived bad months and more bad months, with usually a few days of good. These past two weeks that we have had that are GOOD have been a miracle in itself and make me actually believe we are on the right track.
The silver lining in all of this? No one has been diagnosed over the age of 14. Meaning it truly is a pediatric phenomenon. Will she grow out of it? Possibly. Will she always have an autoimmune disorder? Possibly. No one knows because this is so new.
Dr. Elliott said she was the youngest patient he has ever diagnosed, as well as the one with the highest strep titres he has ever seen. He said it is very clear that she has had several strep infections that have gone undiagnosed in her little life.
This is what made me cry in the car in the parking garage while Catherine watched Thomas the Train. There was no way I was going to try and drive out of there while losing my shit.
Part of me is thankful we have a diagnosis. Odds are, her ear infections have been strep infections all along. It just finally took this nasty, green goop coming out of her ear to see it.
The next steps? There are a lot of them. They will take up a large part of my summer.
Thursday, we have an appointment with Dr. Young, who is an ENT. He specializes in difficult cases like this, and works with Dr. Elliot in the removal of adenoids/tonsils to try and stem infections. We have an appointment for a Penicillin Immersion Allergy test in two weeks to see if Catherine really is allergic to amoxicillin, or if the rash she got the first time she took it (and the last time...) was an allergy, or a manifestation of the autoimmune disorder. That will be a three hour test where they give her medicine over a period of time and watch her reactions to it. Yes, we will be locked in a room for a period of time. God help me. And did I mention that if she does not test positive to the penicillin that this is what she will have to take, two times a day, for a YEAR in order to hopefully help her through this?
From there, we still have an appointment with the nutritionist, which Dr. Elliot was going to refer us to next, as it seems as though gut health is linked to strep infections as well. This might help alleviate her potential for getting strep, AGAIN, and hopefully curb some of the side effects of PANDAS.
Lastly, we have an appointment with a psychiatrist, who will help us deal with Catherine's rages. Meaning, she will give us tips and tricks to diffuse her, as well as help her and our family cope with her OCD, ADHD, ODD, and severe anxiety (particularly separation anxiety, like when I just go out to grab something out of my car for a SECOND, or when James falls asleep before she does, in which case she FREAKS OUT).
We will still have a geneticist test her, but appointments are a year out. Yes, A YEAR. But at least we have the referral. It will be nice to know what else is going on.
From there, I am reaching out. What are the odds that I have a co-worker, who I consider a good friend of mine, whose son was just diagnosed? So we can take this road together, which we started today with many texts back and forth. I posted on Des Moines Moms Facebook page, in hopes that I can reach out to others, and see what has worked for them.
I am googling the shit out of this syndrome, because I know it will always be an uphill battle. Meaning, I will always have to fight it. It's not widely recognized by the medical community, meaning insurance probably won't cover most of it. AWESOME. But I'm prepared to pay what I have to pay, and go to the ends of the earth for this little girl.
I am hoping that we will have many more good times, and fewer bad times, now that we have a path forward (kind of...).
As I have said before, I am going to be the best damn mom to this little girl that I can be. God gave her to me, I will take care of her.
At our last pediatric appointment, with our NEW pediatrician, I got a call saying that Catherine's strep titres were the highest they had ever seen at their clinic. Strep titres are essentially the antibodies our bodies produce to get rid of, yep, you guessed it, Group A Strep and subsequent strep infections (I guess they go all the way up to H?). That didn't really surprise me since Catherine had had Group A Strep a couple of weeks before having the test. However, it did surprise me that it was "so high" after two weeks of antibiotics (with three ear infections on those antibiotics).
Then came last Thursday, when Catherine had her 3 year Well Child Check. I explained to our old pediatrician (who I think we will stay with for the time being - she DOES know our family really well and finally seems to be listening) that Catherine had been doing so well since her dose of antibiotics. I was very excited about it but 1) I was discouraged as that would mean the Pediatric Diagnostic Clinic would not see Catherine at her worst (I spoke WAY too soon on that one), and 2) I was simply waiting for the next shoe to drop. Meaning, I knew it wasn't going to last long (called that one).
No sooner than the next day did Catherine start to plunge back into the hell that is whatever it is that is plaguing her. Frequent outbursts, inconsolable temper tantrums, very aggressive, separation anxiety and frequent "humming" which we now know are her tics.
Saturday and Sunday were nightmares. Monday came and guiltily, I dropped Catherine off at daycare and enjoyed my day, sans nightmare. James and I hung out, and I anxiously gathered things in preparation for today's appointment.
It's embarrassing to say, but I nearly cried through Catherine's entire appointment. However, I have to say that the staff at Blank Children's Hospital is awesome, and they made me feel like a normal, concerned mom, rather than a crazy person with a possible diagnosis of Munchausen Syndrome by Proxy.
Essentially, I sent Catherine's running google doc to the doctor for him to look it over before I got there. I knew I was going to be a mess, and I knew that in that anxiety-fueled mess I would forget things. So I sent it to them. The biggest thing that stuck out to me: ALL of them read it. The nurse read it, the Resident read it, Dr. Elliot read it. BEFORE I got there. And then they wrote down all the questions they had for me, which made the appointment much shorter than I thought it was going to be.
Catherine was none-too-thrilled to be there, and when we got there, she immediately registered a fever. WHAT? Then I laughed. I had even said to a friend the other night that I bet within the week Catherine had an ear infection. For her to have a fever, I was almost right on the money, although it showed up a few days earlier than my prediction. Nevertheless, I was right. Because I know my daughter.
So we were whisked away to a waiting room where they brought her toys and just like that, she started lining them up. Not playing with them, but lining them up. Certain toys had to go certain places. When I picked up a My Little Pony to play with her, she threw a fit. Score one for mom - the doctor was going to be able to see Catherine nearly at her worst. In looking in her ears, she nearly kicked herself out of my arms. This wasn't a kid who didn't want to be there. This was an uncontrollable, instinctual urge to throw herself out of my arms. She nearly succeeded. Looking in her ears does not hurt, and she knows that. But she fought it with everything she had.
Dr. Elliot, the resident (I cannot remember his name for the life of me), and Nurse Anne were so patient with her. The gist of all of it was that Catherine does indeed, have PANDAS (Pediatric Acute-Onset Neuropsychiatric Disease Associated with Strep). Essentially, it's an autoimmune disorder where Catherine's immune system overreacts to every illness. Mostly, strep. So her body builds a ton of antibodies to ward off the infection. Unfortunately, strep is a molecular mimicry bacteria, and for whatever reason, these antibodies will start attacking the brain. Mainly, the basal ganglia, which is responsible for behaviors. What strikes me is that chemicals that cross the central nervous system, can exacerbate symptoms. Cue Zyrtec. And food dyes.
Most of the behaviors manifest themselves as severe ADHD, OCD, ODD (oppositional defiance disorder) and children will have "tics." Not to mention the anxiety that goes along with all of that, particularly separation anxiety. The awesome thing (read: shitty) about all of this is that the tics can be so different from one kid to the next. But Catherine's is humming. The worse she is, the more humming she does and the less speech she has. ADHD and OCD have such wide-ranging criteria that it's hard to figure out that when Catherine lines her toys up, or when she has her baby JUST SO in her stroller, that is OCD. ADHD is her fidgeting. All. The. Time. We call it rapid toddler adjusting. She just cannot sit still. I think the reason she loves to dance is because it allows her to get her wiggles out. This also manifests itself as jerky movements. Cue Catherine's dancing again. Emotional lability (think schizophrenic) with a tendency to have wide-arching emotions (Catherine to a T), is even more of a tell-tale sign of PANDAS. But all of these symptoms HAVE to include the elevated strep titres. Not to mention, all of these go away when on antibiotics. Cue Catherine's antibiotic diagnostic test almost three weeks ago.
Combine these symptoms with elevated strep titres, plus observing the behavior over periods of time (thank GOD that I had the sense to start a google doc), and viola. PANDAS.
The even MORE awesome thing (read: shitty) is that with PANDAS, you're on a roller coaster and each dip in the tracks gets deeper and deeper. Meaning once the strep infection is gone, there are still antibodies left. Cue another strep infection, and you can have twice as many antibodies as you did before. Meaning worsened behaviors. This is exactly what we have seen in Catherine since she was 18 months old. It started out with good days and bad days. Then it was good weeks and bad weeks. I can now say we have survived bad months and more bad months, with usually a few days of good. These past two weeks that we have had that are GOOD have been a miracle in itself and make me actually believe we are on the right track.
The silver lining in all of this? No one has been diagnosed over the age of 14. Meaning it truly is a pediatric phenomenon. Will she grow out of it? Possibly. Will she always have an autoimmune disorder? Possibly. No one knows because this is so new.
Dr. Elliott said she was the youngest patient he has ever diagnosed, as well as the one with the highest strep titres he has ever seen. He said it is very clear that she has had several strep infections that have gone undiagnosed in her little life.
This is what made me cry in the car in the parking garage while Catherine watched Thomas the Train. There was no way I was going to try and drive out of there while losing my shit.
Part of me is thankful we have a diagnosis. Odds are, her ear infections have been strep infections all along. It just finally took this nasty, green goop coming out of her ear to see it.
The next steps? There are a lot of them. They will take up a large part of my summer.
Thursday, we have an appointment with Dr. Young, who is an ENT. He specializes in difficult cases like this, and works with Dr. Elliot in the removal of adenoids/tonsils to try and stem infections. We have an appointment for a Penicillin Immersion Allergy test in two weeks to see if Catherine really is allergic to amoxicillin, or if the rash she got the first time she took it (and the last time...) was an allergy, or a manifestation of the autoimmune disorder. That will be a three hour test where they give her medicine over a period of time and watch her reactions to it. Yes, we will be locked in a room for a period of time. God help me. And did I mention that if she does not test positive to the penicillin that this is what she will have to take, two times a day, for a YEAR in order to hopefully help her through this?
From there, we still have an appointment with the nutritionist, which Dr. Elliot was going to refer us to next, as it seems as though gut health is linked to strep infections as well. This might help alleviate her potential for getting strep, AGAIN, and hopefully curb some of the side effects of PANDAS.
Lastly, we have an appointment with a psychiatrist, who will help us deal with Catherine's rages. Meaning, she will give us tips and tricks to diffuse her, as well as help her and our family cope with her OCD, ADHD, ODD, and severe anxiety (particularly separation anxiety, like when I just go out to grab something out of my car for a SECOND, or when James falls asleep before she does, in which case she FREAKS OUT).
We will still have a geneticist test her, but appointments are a year out. Yes, A YEAR. But at least we have the referral. It will be nice to know what else is going on.
From there, I am reaching out. What are the odds that I have a co-worker, who I consider a good friend of mine, whose son was just diagnosed? So we can take this road together, which we started today with many texts back and forth. I posted on Des Moines Moms Facebook page, in hopes that I can reach out to others, and see what has worked for them.
I am googling the shit out of this syndrome, because I know it will always be an uphill battle. Meaning, I will always have to fight it. It's not widely recognized by the medical community, meaning insurance probably won't cover most of it. AWESOME. But I'm prepared to pay what I have to pay, and go to the ends of the earth for this little girl.
I am hoping that we will have many more good times, and fewer bad times, now that we have a path forward (kind of...).
As I have said before, I am going to be the best damn mom to this little girl that I can be. God gave her to me, I will take care of her.
Tuesday, June 6, 2017
Battle of the Bulge: Part III, 16 Months Post-Partum
I was getting lost in my past blog posts and realized I have posted nothing on my weight-loss journey since... I don't really remember. Yes, I am, in fact, the lightest I have been since 2010 I believe, when I was going through the psycho stalker student situation and had recently lost my dad, so I existed on oreos and mountain dew (OMG, that's disgusting). But, what's interesting to me, is how I lost that much after having Drew.
I put on a lot of weight with Drew. A LOT. It was a combination of stress, being busy all the time, managing two small children, managing Catherine's shit, and having a husband who was barely home. Oh yes, and a bathroom remodel and kitchen remodel. Looking back, what the hell was I thinking? I was already heavier than I wanted to be when I found out I was pregnant, and from there, I ate my feelings. And I had a lot of feelings.
I think I gained somewhere between 50-55 pounds with Drew. The most I had with any of the kids, and therefore, the most I have ever lost. I remember going back to school and HATING the way I looked. I went out and bought new clothes (of which, I have since given away or donated to Goodwill). It was terrible. I felt jiggly, I wasn't comfortable in my own skin, and I hated that I didn't have time to exercise.
Fast-forward to September, when Drew was about 6 months, and I discovered that food dyes made Catherine a psycho. So we took those things out of our house. Now, NO ONE in my house eats anything with dye in it. Like all things, I started researching what is REALLY in our food.
Um, shit. Shit is in our food. Complete. Shit. It's disgusting. I had no idea that some of the ingredients for Mountain Dew also came from PETROL BASED PRODUCTS. Say, what? I was grossed out. So I switched to cappucino. Because, you know, that will really help the pounds melt off...
I did that for a few months, enjoyed the hell out of it because it tastes like a hot milkshake, and then really got on board. I cut all artificial sugars and caffeine out of my diet. Did I mention I did this a week before we went on our cruise? Kind of stupid, but I figured the week before spring break, I had nothing going on at school. No night commitments, no competitions, nothing. So I might as well.
When we left for our cruise, I was 162. Close to my pre-pregnancy weight. In all of this, Eric decided he was going to try and lose weight too, but without cutting the caffeine and sugars. Yet, he still had begun losing weight. I managed to avoid a ton of food and only gained four (FOUR!) pounds on the cruise. But after that, it melted off.
I didn't realize how much sugar and the crap that is put into our food helps keep the pounds on. I am now down to 155. Again, one of the lightest weights I have been in several years. Definitely before kids.
I have also realized how much people (like me) don't really need caffeine. I have always been a high energy person. Now, I am a high energy person without the caffeine. That isn't to say that I don't drink it. I will have a sip of Eric's pop if we go out to eat, or I will sneak the occasional cookie in the break room at work, or have a few M&M's if my co-worker has some at lunch. But for the majority of my diet, I have simply cut out crappy food and caffeine. What a difference it has made. I don't feel tired in the mornings, like I used to. I still feel tired, but I wake up to that fully awake state within 10 minutes. I do lag in the afternoons, but then I just eat something and it helps immensely. I sleep so much better! It's crazy that me, the girl who drank a Surge and ate Toaster Strudels before school every morning in high school, and existed on Oreos and Mountain Dew during my teaching career has taken all of that out of my diet. But it's been awesome.
The bottom line is that I have done it for Catherine. If I am able to do it, I can keep it out of my house, and she will never know the difference. She won't be asking for a sip of pop, or wondering what I'm drinking in the mornings. I have noticed a huge difference in my other two as well. They sleep longer, fall asleep faster, and overall are very well behaved, sans the typical 1.5/5 year old stuff. Our bedtime routine (cue knocking on wood, please) lasts 30 minutes, from the time we head upstairs to the time the kids fall asleep. FALL ASLEEP. And they stay asleep. It's awesome. Although, now watch them wake up four times tonight for some reason.
In all, it's been an interesting experience as I didn't think it would do much for me. I figured I would always perpetually be a little heavier after kids. Needless to say, I am happy to see that is not the case. I am glad I did this for ME, and I am glad Eric is with me on this journey. Eric has lost a total of 25 pounds already. TWENTY-FIVE! And this is from a guy who is pretty built as he lifts heavy things all day. I have lost ten. In three months.
Go us.
I put on a lot of weight with Drew. A LOT. It was a combination of stress, being busy all the time, managing two small children, managing Catherine's shit, and having a husband who was barely home. Oh yes, and a bathroom remodel and kitchen remodel. Looking back, what the hell was I thinking? I was already heavier than I wanted to be when I found out I was pregnant, and from there, I ate my feelings. And I had a lot of feelings.
I think I gained somewhere between 50-55 pounds with Drew. The most I had with any of the kids, and therefore, the most I have ever lost. I remember going back to school and HATING the way I looked. I went out and bought new clothes (of which, I have since given away or donated to Goodwill). It was terrible. I felt jiggly, I wasn't comfortable in my own skin, and I hated that I didn't have time to exercise.
Fast-forward to September, when Drew was about 6 months, and I discovered that food dyes made Catherine a psycho. So we took those things out of our house. Now, NO ONE in my house eats anything with dye in it. Like all things, I started researching what is REALLY in our food.
Um, shit. Shit is in our food. Complete. Shit. It's disgusting. I had no idea that some of the ingredients for Mountain Dew also came from PETROL BASED PRODUCTS. Say, what? I was grossed out. So I switched to cappucino. Because, you know, that will really help the pounds melt off...
I did that for a few months, enjoyed the hell out of it because it tastes like a hot milkshake, and then really got on board. I cut all artificial sugars and caffeine out of my diet. Did I mention I did this a week before we went on our cruise? Kind of stupid, but I figured the week before spring break, I had nothing going on at school. No night commitments, no competitions, nothing. So I might as well.
When we left for our cruise, I was 162. Close to my pre-pregnancy weight. In all of this, Eric decided he was going to try and lose weight too, but without cutting the caffeine and sugars. Yet, he still had begun losing weight. I managed to avoid a ton of food and only gained four (FOUR!) pounds on the cruise. But after that, it melted off.
I didn't realize how much sugar and the crap that is put into our food helps keep the pounds on. I am now down to 155. Again, one of the lightest weights I have been in several years. Definitely before kids.
I have also realized how much people (like me) don't really need caffeine. I have always been a high energy person. Now, I am a high energy person without the caffeine. That isn't to say that I don't drink it. I will have a sip of Eric's pop if we go out to eat, or I will sneak the occasional cookie in the break room at work, or have a few M&M's if my co-worker has some at lunch. But for the majority of my diet, I have simply cut out crappy food and caffeine. What a difference it has made. I don't feel tired in the mornings, like I used to. I still feel tired, but I wake up to that fully awake state within 10 minutes. I do lag in the afternoons, but then I just eat something and it helps immensely. I sleep so much better! It's crazy that me, the girl who drank a Surge and ate Toaster Strudels before school every morning in high school, and existed on Oreos and Mountain Dew during my teaching career has taken all of that out of my diet. But it's been awesome.
The bottom line is that I have done it for Catherine. If I am able to do it, I can keep it out of my house, and she will never know the difference. She won't be asking for a sip of pop, or wondering what I'm drinking in the mornings. I have noticed a huge difference in my other two as well. They sleep longer, fall asleep faster, and overall are very well behaved, sans the typical 1.5/5 year old stuff. Our bedtime routine (cue knocking on wood, please) lasts 30 minutes, from the time we head upstairs to the time the kids fall asleep. FALL ASLEEP. And they stay asleep. It's awesome. Although, now watch them wake up four times tonight for some reason.
In all, it's been an interesting experience as I didn't think it would do much for me. I figured I would always perpetually be a little heavier after kids. Needless to say, I am happy to see that is not the case. I am glad I did this for ME, and I am glad Eric is with me on this journey. Eric has lost a total of 25 pounds already. TWENTY-FIVE! And this is from a guy who is pretty built as he lifts heavy things all day. I have lost ten. In three months.
Go us.
Summer Update: The Journey with Catherine
Here we are, post-antibiotic diagnostic test, and guess what? We have a new Catherine. A beautiful Catherine. A FUNNY Catherine! Oh, how funny you can be. And SOCIAL. You love having conversations!
We saw a new pediatrician, who referred us to the same doctor our old pediatrician finally referred us to. I didn't give two shits that someone in that doctor's office at Blank Children's Hospital was going to see that two different doctors referred us. Just get us a fucking appointment!
We saw Dr. Malani on Thursday, May 22nd. She was pretty awesome, but skeptical. I had faxed over Catherine's running google doc to her and she actually READ it. I couldn't believe it. Instead of saying things like, "This might just be the way she is" she said things like, "why don't we do this?" She referred us to Dr. Elliot at Blank Children's Hospital. She also referred us to Dr. Young, who is an ENT here in the metro. Both doctors are known for taking on difficult cases and diagnosing them, or helping parents find the best results. Dr. Elliot is the one doctor in the metro who works closely with the immunologists at University of Iowa (oh, yay...) to diagnose PANS and PANDAS. The thing that KILLS me is that, guaranteed, he will see the "good" Catherine and she will be dismissed like so many times before. So I will have to go in there, and have someone simply believe what I am saying without them blaming me for Munchausen by Proxy. Wish me luck.
Now, back to your new appointment. We had your blood tested, but we haven't heard back about results. I should really call, but a lot of things have happened in the past week and quite frankly, when I think about it, it's after-hours or I have too many kids in my house (hellooooo neighborhood!). It's nearly impossible to get things done during the day when I have all three kids, plus the neighborhood kids, running around in our backyard, or running in and out of the house (which I have put a lid on, but it still happens). Just today, I had a half hour to myself, so I quick did some things for Eric's business and then all of a sudden, James and his friends were back, needing lunch, getting James' swimsuit. Then I was buying Adventureland season passes and all of a sudden, time gets away from me. Ugh. But I digress. A lot.
Beyond the two doctors above, we also got a referral to the University of Iowa with a geneticist. Probably to test for autism. WHICH SHE DOESN'T HAVE. In all of my google research, one thing I I have not looked up is if autism is a DNA thing. I will be anxious to know if something comes of that.
Otherwise, I am looking toward the light at the end of the tunnel. Hopefully, this leads to something. But in all of that, I am relishing the moments of happiness that Catherine has given us. She has been giving us new words every day, starting to string together complex sentences, and has many conversations with us (OH how she loves to talk). I love every minute of it. But in all of that, I am waiting for the other shoe to drop. Is the anger over a book at bedtime the start of the next days' temper tantrums that are uncontrollable? I can't help but be on the edge of my seat all the time.
But until the next shitty day with Catherine, I will soak up the good ones. Because when they're good, they're GOOD.
We saw a new pediatrician, who referred us to the same doctor our old pediatrician finally referred us to. I didn't give two shits that someone in that doctor's office at Blank Children's Hospital was going to see that two different doctors referred us. Just get us a fucking appointment!
We saw Dr. Malani on Thursday, May 22nd. She was pretty awesome, but skeptical. I had faxed over Catherine's running google doc to her and she actually READ it. I couldn't believe it. Instead of saying things like, "This might just be the way she is" she said things like, "why don't we do this?" She referred us to Dr. Elliot at Blank Children's Hospital. She also referred us to Dr. Young, who is an ENT here in the metro. Both doctors are known for taking on difficult cases and diagnosing them, or helping parents find the best results. Dr. Elliot is the one doctor in the metro who works closely with the immunologists at University of Iowa (oh, yay...) to diagnose PANS and PANDAS. The thing that KILLS me is that, guaranteed, he will see the "good" Catherine and she will be dismissed like so many times before. So I will have to go in there, and have someone simply believe what I am saying without them blaming me for Munchausen by Proxy. Wish me luck.
Now, back to your new appointment. We had your blood tested, but we haven't heard back about results. I should really call, but a lot of things have happened in the past week and quite frankly, when I think about it, it's after-hours or I have too many kids in my house (hellooooo neighborhood!). It's nearly impossible to get things done during the day when I have all three kids, plus the neighborhood kids, running around in our backyard, or running in and out of the house (which I have put a lid on, but it still happens). Just today, I had a half hour to myself, so I quick did some things for Eric's business and then all of a sudden, James and his friends were back, needing lunch, getting James' swimsuit. Then I was buying Adventureland season passes and all of a sudden, time gets away from me. Ugh. But I digress. A lot.
Beyond the two doctors above, we also got a referral to the University of Iowa with a geneticist. Probably to test for autism. WHICH SHE DOESN'T HAVE. In all of my google research, one thing I I have not looked up is if autism is a DNA thing. I will be anxious to know if something comes of that.
Otherwise, I am looking toward the light at the end of the tunnel. Hopefully, this leads to something. But in all of that, I am relishing the moments of happiness that Catherine has given us. She has been giving us new words every day, starting to string together complex sentences, and has many conversations with us (OH how she loves to talk). I love every minute of it. But in all of that, I am waiting for the other shoe to drop. Is the anger over a book at bedtime the start of the next days' temper tantrums that are uncontrollable? I can't help but be on the edge of my seat all the time.
But until the next shitty day with Catherine, I will soak up the good ones. Because when they're good, they're GOOD.
Tuesday, May 23, 2017
Just Another Manic Monday...
Although it's Tuesday, this is definitely an appropriate title, as things finally came to a head with Catherine last Monday.
After a hellish week with Catherine, I sat down on Sunday night defeated, sad and extremely tired. Did I mention that in all of this, I am also taking a full-time graduate school summer semester? Yeah, that started last Monday. So talk about making my life a little more hectic, but I definitely needed something for ME. So I am glad that I am doing this. But enough about me...
On Sunday night, I noticed that I had not checked my messages for a week or so. So I checked the messages. One was from our ENT. He said he had the test results back from Catherine's ear culture (you know, the nasty, goopy snot that comes out of her ear when she has an ear infection). I knew this already because, thanks to technology, I get an email update every time that a test result comes in. It came back as Group A Strep. I didn't think much about it, because honestly, I didn't figure anyone was going to help me. However, in his message, he stated that it was "unusual" and I should consult with my pediatrician about it. So I made an appointment Monday morning.
Monday afternoon, I took time off work, AGAIN, to take Catherine to our pediatrician, AGAIN. By this time, her ear was leaking clear fluid and she had a runny nose. I knew an ear infection was coming because that's our M.O. with ear infections. Not to mention, she had a pretty terrible day at daycare.
So I definitely was anxious to get there. I thought we were just going in for an ear infection, but the past few weeks ended up taking a toll on me. I cried through almost the entire appointment. I cried harder when the doctor told me that she thought we may have exhausted all of our resources, and nearly punched her in the face when she told me that maybe this is just the way it is. She mentioned something called PANDAS, which went in one ear and out the other, and just felt defeated. However, she wanted to try an antibiotic diagnostic test on Catherine to see if her behaviors improved. So Monday, I headed to a special compounding pharmacy since almost ALL pharmacies add dyes to their antibiotics. We had our first round, the greatest dose that she would get all week, on Monday night.
On Tuesday, Catherine woke up with - yep, you guessed it - an ear infection. Are you fucking kidding me? Didn't I even say to the doctor when she looked into Catherine's ears that her ears looked fine and yes, one was draining, but it wasn't red or swollen or anything. Less than 12 hours later - ear infection. And it was nasty. Yellow, goopy snot. Literally, snot. Just like all the other times she has had snot come out of her ear.
So I took a picture of it. I was prepared to glove up and start fighting. This was disgusting, Catherine can't possibly be able to hear with this stuff in her ear, and clearly, the antibiotic was not working, even after the gigantic dose we gave her Monday night.
Tuesday night, we gave Catherine another dose and on Wednesday, she was an absolute DELIGHT. It was like night and day. Her aggression was gone, her tics (particularly the hm-ing that she does), she laughed, she was able to play with James. We were thrilled to have Good Catherine back for at least awhile. But I am always waiting for the other shoe to drop.
Wednesday night brought storms through the area, and our neighbors tree fell into our house. A little damage in a lot of places, so we are fortunate that way, but we were able to remember to give Catherine her latest dose of medicine.
Thursday was another awesome day. By the way, did I mention that we were keeping a very VERY strict diary of her behaviors. Daycare included. It was so nice to report nothing new, terrible, or heartbreaking on Thursday. Friday was a little tougher, but I thought Catherine was maybe tired from the week. Low and behold, her OTHER ear (yes, the one with the tube still in) started leaking clear fluid. Even after a huge dose of antibiotics all week. Friday night brought havoc with clearing tree debris, and we forgot to give Catherine her final dose of antibiotic. I can tell you it wouldn't have made a difference. Friday night, her started leaking, Saturday morning (her birthday), she woke up to a full fledged ear infection in her OTHER ear. Not to mention, Saturday gave us Bad Catherine, which broke my heart because it was her birthday. I tried as hard as I could to diffuse every situation where Catherine would lose her shit, but at the end of the day, I was just as defeated, tired and sad as I had been the Sunday before.
The next day, I was spent. I was short-tempered, angry that we cannot figure out what is going on with Catherine, and waiting for the second that I could email our pediatrician the results. Sunday night, I did just that, but yesterday, I received an email that we should maybe think about seeing the developmental specialists at University of Iowa again and have I gotten her hearing tested by the ENT again?
ARE YOU FUCKING SERIOUS?
I wanted to explode. The whole day, I was in tears. WHY WAS NO ONE LISTENING TO ME?
This was a girl who had very obviously improved while on antibiotics, but clearly, the antibiotics were not strong enough to help her all the way through. This was a roller coaster ride that I wanted to get the fuck off of!!!!!
I sat on that email and wrote and re-wrote what I wanted to say over and over again. In all of it, between the lines, I wrote I AM BREAKING. I can feel it. It was like the 50-year old ash tree that fell on our house. I could feel myself splitting into two parts. The defeated part, which I let take hold for about 12 hours, and the pissed off part. Again, WHY WAS NO ONE LISTENING TO ME?
Today, I sat down and wrote this:
I have written this email about nine million times, so bear with me. In the end, if you would like us to seek out a new pediatrician, then I guess that's that.
No the ENT hasn't checked her hearing because every time we go back, her ears are full of nastiness. When he can see anything, he does say there is fluid behind her ear drums. This is also the same guy who prescribed her amoxicillin when it clearly says on her chart that she is allergic to it. But at least he said strep in her ear was "unusual."
I may be taking your comment wrong, but I don't believe Catherine's behavior is developmental. And forgive me, but I don't know what a developmental person would do for us. The last one suggested therapies for us, and suggested we have her tonsils removed. The ENT disagreed with that as well. To give you an idea, Catherine scored an 89 on her academic portion of the AEA evaluation. 90 is considered in the range of "normal." So yes, Catherine is delayed, but she is only on the lower side of her same-age peers. The reason she is started a special preschool is because 1) AEA suggested since she was at an 89, it would help at least catch her up and 2) since she is SO social, a special preschool will help. So we pushed for it, AEA reevaluated her, and again, she scored an 80. So into special preschool we go.
I have spent much of this past year in tears, angry, frustrated and relieved when SOMETHING seems to be going well. Like taking her off Zyrtec and taking dyes out of her diet. But then we go right back to where we were. I am humble enough to know I am no doctor, but smart enough to know my own daughter. I don't have my blinders on, and I don't have the wool pulled over my eyes. So here are my thoughts:
We are dealing with two different periods of time; 0-18 months and 18-months on, as 18 months is when her behaviors and the ear infections started. I think it all has to do with her ear infections, although several people have told me that's not possible. I was right about James' egg allergy, I was right about Catherine's milk allergy, I feel like I am right about this.
If she is too young for PANDAS or whatever, maybe she is the youngest to ever be diagnosed with it. If she is too young for early-onset ADHD or OCD, maybe she will be the youngest person to ever have these things (even though I really don't think that's it). But why aren't we testing for it? I am tired of doing this on my own. She has a yeast infection that will not go away, dilated pupils, aggression, tics, obsession, screams for hours in the middle of the night (no, they aren't night terrors), and has left enough marks on Drew to cause scarring. We have been doing this for a year and a half. She has been a difficult child, like you said on Monday, but I don't think that this is just the way she is. I can't accept that. You don't see what I see, and you don't deal with the things that we have dealt with nearly every day. We are on a roller coaster and I would like to get off of it. We would appreciate your help in that, if possible.
Please read this document. Look at the pictures. Help us in a way that we need to be helped. https://docs.google.com/document/d/10HJKCD59-t7LBtujLRPFAxW9kaM7erXvGOC0L6msHDk/edit?usp=sharing
Thank you - Laura
If you are reading this, I really encourage you to read my monthly entries from 18 months on. As I reviewed it today, it's incredibly heart-breaking. As I reviewed it yesterday, I was shaking my head. I have said from the beginning that this was something to do with her ears. Then I stopped because I had an ENT berate me while breastfeeding my newborn as I consulted with him about Catherine's balance, and her lack of speech and her glossy eyes and runny nose. It was like he was telling me I was crazy. And who was I? Just a post-partum mom, 50 pounds overweight and at that moment, absolutely hating everyone in the medical profession. I consulted with a second ENT four months later, who also told me I was crazy, it was NOT her ears, they looked fine and she could hear just fine. Rejected. Again. I went back to my pediatrician. No help. Even after the tubes, I had the ENT tell me that tubes don't always help with ear infections. Ummm, have you seen the shit that comes out of her ears? Did you know that you don't even have to have an appointment to get ear drops from the ENT? You just call and say that her ear is draining. I can't tell you how many times, before taking Zyrtec and dyes out that I called and said her is was draining, even when it wasn't, because it seemed like she was just so much better because she was on antibiotics. If you read the document, you will see that I wrote that somewhere in the many pages of documentation.
So I posted on my moms facebook group on Monday and asked for recommendations for a new pediatrician. Because clearly, I wasn't getting answers with the shitty team I have now.
In all of that, between my two grad classes that I am taking (at three credits each... oy...), between wrapping up the end of the school year, and between taking care of two other children (but not my house... you should see my house...), I wrote that email. Then I looked up PANDAS. Like I said to my pediatrician, I am not necessarily looking to find what "IT" is that is causing Catherine to behave this way, I just want people to start ruling things OUT.
Looking at PANDAS, I was pretty skeptical. Only diagnosed in children usually aged 3-12. The biggest symptoms are:
1) Agression (Catherine)
2) OCD tendencies (Catherine)
3) Emotional lability (Catherine)
4) Periods of "good" and "bad" (Catherine)
5) Tics (Catherine's hm-ing)
But yet, this is where Catherine can fit a lot of categories. Like I said in the email, if she has early-onset OCD (like, REALLY early), let's get it figured out. What's really interesting about PANDAS is that it is an acronym for (are you ready?):
Pediatric Acute-onset Neuropsychiatric Disorder ASSOCIATED WITH STREP.
Weird, Catherine just so happened to have Group A Strep draining out of her ear. FOR A YEAR AND A HALF.
Since then, like my typical nature, in between all the other shit I have to do in life, I have googled the SHIT out of PANDAS. Apparently, it is new, rare (just our luck), and hard to diagnose. It's also hard to take care of. Once the onset happens, if it is not taken care of quickly, the symptoms can become permanent. Awesome.
And even greater kicker was that somewhere, I read that any medicines that cross the central nervous system can exacerbate symptoms. LIKE ZYRTEC. So now I was actually paying attention.
So here we are, going back to the ears. Like I wanted to in the first place.
After my scathing email to my pediatrician (because no one can talk to their pediatrician on the phone anymore), she emailed me back apologizing. In her first email, and in our initial appointment last week, she said that we could look into PANDAS but she was "pretty young." I am guessing that maybe Catherine is the youngest patient on the face of the planet that may have it? Who knows.
Either way, I am writing this blog post before I email her back. We are still keeping the appointment with the new pediatrician. I am still angry about it. I am still mad at everyone who have said things to me like, "if she had a milk allergy, she would have a rash" or "it's not her ears. Her ears aren't the problem" or "take her out of daycare." I don't know what will happen next. Oddly enough, someone that I work with, that I eat lunch with every day, just had her son diagnosed with PANDAS. But hers was a different story. He was getting into a ton of trouble at school, so she was referred to a psychologist, and from there, the psychologist referred her to an immunologist, and from there, he diagnosed it. She had never even heard of it. What would be the odds that I would know someone whose son was diagnosed? What would be the odds that we might finally be on the brink of what is going on with Catherine?
Until then, we will see what happens on Thursday with our new pediatrician. We will see what happens this week with our old pediatrician. We have Catherine on yet another dose of nasty anti-biotics, so we will see what that brings. Guaranteed, it's a new little girl with a better lease on life. But only for a little while.
Onward...
After a hellish week with Catherine, I sat down on Sunday night defeated, sad and extremely tired. Did I mention that in all of this, I am also taking a full-time graduate school summer semester? Yeah, that started last Monday. So talk about making my life a little more hectic, but I definitely needed something for ME. So I am glad that I am doing this. But enough about me...
On Sunday night, I noticed that I had not checked my messages for a week or so. So I checked the messages. One was from our ENT. He said he had the test results back from Catherine's ear culture (you know, the nasty, goopy snot that comes out of her ear when she has an ear infection). I knew this already because, thanks to technology, I get an email update every time that a test result comes in. It came back as Group A Strep. I didn't think much about it, because honestly, I didn't figure anyone was going to help me. However, in his message, he stated that it was "unusual" and I should consult with my pediatrician about it. So I made an appointment Monday morning.
Monday afternoon, I took time off work, AGAIN, to take Catherine to our pediatrician, AGAIN. By this time, her ear was leaking clear fluid and she had a runny nose. I knew an ear infection was coming because that's our M.O. with ear infections. Not to mention, she had a pretty terrible day at daycare.
So I definitely was anxious to get there. I thought we were just going in for an ear infection, but the past few weeks ended up taking a toll on me. I cried through almost the entire appointment. I cried harder when the doctor told me that she thought we may have exhausted all of our resources, and nearly punched her in the face when she told me that maybe this is just the way it is. She mentioned something called PANDAS, which went in one ear and out the other, and just felt defeated. However, she wanted to try an antibiotic diagnostic test on Catherine to see if her behaviors improved. So Monday, I headed to a special compounding pharmacy since almost ALL pharmacies add dyes to their antibiotics. We had our first round, the greatest dose that she would get all week, on Monday night.
On Tuesday, Catherine woke up with - yep, you guessed it - an ear infection. Are you fucking kidding me? Didn't I even say to the doctor when she looked into Catherine's ears that her ears looked fine and yes, one was draining, but it wasn't red or swollen or anything. Less than 12 hours later - ear infection. And it was nasty. Yellow, goopy snot. Literally, snot. Just like all the other times she has had snot come out of her ear.
So I took a picture of it. I was prepared to glove up and start fighting. This was disgusting, Catherine can't possibly be able to hear with this stuff in her ear, and clearly, the antibiotic was not working, even after the gigantic dose we gave her Monday night.
 |
| This is usually the start to all of Catherine's ear infections. Begins with clear fluid, turns into yellow snot, and then usually bright green and just pours out of her ear. This was taken after just dipping the swab into the lower part of the ear where the snot gathers before it runs down the side of her face. |
Tuesday night, we gave Catherine another dose and on Wednesday, she was an absolute DELIGHT. It was like night and day. Her aggression was gone, her tics (particularly the hm-ing that she does), she laughed, she was able to play with James. We were thrilled to have Good Catherine back for at least awhile. But I am always waiting for the other shoe to drop.
Wednesday night brought storms through the area, and our neighbors tree fell into our house. A little damage in a lot of places, so we are fortunate that way, but we were able to remember to give Catherine her latest dose of medicine.
Thursday was another awesome day. By the way, did I mention that we were keeping a very VERY strict diary of her behaviors. Daycare included. It was so nice to report nothing new, terrible, or heartbreaking on Thursday. Friday was a little tougher, but I thought Catherine was maybe tired from the week. Low and behold, her OTHER ear (yes, the one with the tube still in) started leaking clear fluid. Even after a huge dose of antibiotics all week. Friday night brought havoc with clearing tree debris, and we forgot to give Catherine her final dose of antibiotic. I can tell you it wouldn't have made a difference. Friday night, her started leaking, Saturday morning (her birthday), she woke up to a full fledged ear infection in her OTHER ear. Not to mention, Saturday gave us Bad Catherine, which broke my heart because it was her birthday. I tried as hard as I could to diffuse every situation where Catherine would lose her shit, but at the end of the day, I was just as defeated, tired and sad as I had been the Sunday before.
The next day, I was spent. I was short-tempered, angry that we cannot figure out what is going on with Catherine, and waiting for the second that I could email our pediatrician the results. Sunday night, I did just that, but yesterday, I received an email that we should maybe think about seeing the developmental specialists at University of Iowa again and have I gotten her hearing tested by the ENT again?
ARE YOU FUCKING SERIOUS?
I wanted to explode. The whole day, I was in tears. WHY WAS NO ONE LISTENING TO ME?
This was a girl who had very obviously improved while on antibiotics, but clearly, the antibiotics were not strong enough to help her all the way through. This was a roller coaster ride that I wanted to get the fuck off of!!!!!
I sat on that email and wrote and re-wrote what I wanted to say over and over again. In all of it, between the lines, I wrote I AM BREAKING. I can feel it. It was like the 50-year old ash tree that fell on our house. I could feel myself splitting into two parts. The defeated part, which I let take hold for about 12 hours, and the pissed off part. Again, WHY WAS NO ONE LISTENING TO ME?
Today, I sat down and wrote this:
I have written this email about nine million times, so bear with me. In the end, if you would like us to seek out a new pediatrician, then I guess that's that.
No the ENT hasn't checked her hearing because every time we go back, her ears are full of nastiness. When he can see anything, he does say there is fluid behind her ear drums. This is also the same guy who prescribed her amoxicillin when it clearly says on her chart that she is allergic to it. But at least he said strep in her ear was "unusual."
I may be taking your comment wrong, but I don't believe Catherine's behavior is developmental. And forgive me, but I don't know what a developmental person would do for us. The last one suggested therapies for us, and suggested we have her tonsils removed. The ENT disagreed with that as well. To give you an idea, Catherine scored an 89 on her academic portion of the AEA evaluation. 90 is considered in the range of "normal." So yes, Catherine is delayed, but she is only on the lower side of her same-age peers. The reason she is started a special preschool is because 1) AEA suggested since she was at an 89, it would help at least catch her up and 2) since she is SO social, a special preschool will help. So we pushed for it, AEA reevaluated her, and again, she scored an 80. So into special preschool we go.
I have spent much of this past year in tears, angry, frustrated and relieved when SOMETHING seems to be going well. Like taking her off Zyrtec and taking dyes out of her diet. But then we go right back to where we were. I am humble enough to know I am no doctor, but smart enough to know my own daughter. I don't have my blinders on, and I don't have the wool pulled over my eyes. So here are my thoughts:
We are dealing with two different periods of time; 0-18 months and 18-months on, as 18 months is when her behaviors and the ear infections started. I think it all has to do with her ear infections, although several people have told me that's not possible. I was right about James' egg allergy, I was right about Catherine's milk allergy, I feel like I am right about this.
If she is too young for PANDAS or whatever, maybe she is the youngest to ever be diagnosed with it. If she is too young for early-onset ADHD or OCD, maybe she will be the youngest person to ever have these things (even though I really don't think that's it). But why aren't we testing for it? I am tired of doing this on my own. She has a yeast infection that will not go away, dilated pupils, aggression, tics, obsession, screams for hours in the middle of the night (no, they aren't night terrors), and has left enough marks on Drew to cause scarring. We have been doing this for a year and a half. She has been a difficult child, like you said on Monday, but I don't think that this is just the way she is. I can't accept that. You don't see what I see, and you don't deal with the things that we have dealt with nearly every day. We are on a roller coaster and I would like to get off of it. We would appreciate your help in that, if possible.
Please read this document. Look at the pictures. Help us in a way that we need to be helped. https://docs.google.com/document/d/10HJKCD59-t7LBtujLRPFAxW9kaM7erXvGOC0L6msHDk/edit?usp=sharing
Thank you - Laura
If you are reading this, I really encourage you to read my monthly entries from 18 months on. As I reviewed it today, it's incredibly heart-breaking. As I reviewed it yesterday, I was shaking my head. I have said from the beginning that this was something to do with her ears. Then I stopped because I had an ENT berate me while breastfeeding my newborn as I consulted with him about Catherine's balance, and her lack of speech and her glossy eyes and runny nose. It was like he was telling me I was crazy. And who was I? Just a post-partum mom, 50 pounds overweight and at that moment, absolutely hating everyone in the medical profession. I consulted with a second ENT four months later, who also told me I was crazy, it was NOT her ears, they looked fine and she could hear just fine. Rejected. Again. I went back to my pediatrician. No help. Even after the tubes, I had the ENT tell me that tubes don't always help with ear infections. Ummm, have you seen the shit that comes out of her ears? Did you know that you don't even have to have an appointment to get ear drops from the ENT? You just call and say that her ear is draining. I can't tell you how many times, before taking Zyrtec and dyes out that I called and said her is was draining, even when it wasn't, because it seemed like she was just so much better because she was on antibiotics. If you read the document, you will see that I wrote that somewhere in the many pages of documentation.
So I posted on my moms facebook group on Monday and asked for recommendations for a new pediatrician. Because clearly, I wasn't getting answers with the shitty team I have now.
In all of that, between my two grad classes that I am taking (at three credits each... oy...), between wrapping up the end of the school year, and between taking care of two other children (but not my house... you should see my house...), I wrote that email. Then I looked up PANDAS. Like I said to my pediatrician, I am not necessarily looking to find what "IT" is that is causing Catherine to behave this way, I just want people to start ruling things OUT.
Looking at PANDAS, I was pretty skeptical. Only diagnosed in children usually aged 3-12. The biggest symptoms are:
1) Agression (Catherine)
2) OCD tendencies (Catherine)
3) Emotional lability (Catherine)
4) Periods of "good" and "bad" (Catherine)
5) Tics (Catherine's hm-ing)
But yet, this is where Catherine can fit a lot of categories. Like I said in the email, if she has early-onset OCD (like, REALLY early), let's get it figured out. What's really interesting about PANDAS is that it is an acronym for (are you ready?):
Pediatric Acute-onset Neuropsychiatric Disorder ASSOCIATED WITH STREP.
Weird, Catherine just so happened to have Group A Strep draining out of her ear. FOR A YEAR AND A HALF.
Since then, like my typical nature, in between all the other shit I have to do in life, I have googled the SHIT out of PANDAS. Apparently, it is new, rare (just our luck), and hard to diagnose. It's also hard to take care of. Once the onset happens, if it is not taken care of quickly, the symptoms can become permanent. Awesome.
And even greater kicker was that somewhere, I read that any medicines that cross the central nervous system can exacerbate symptoms. LIKE ZYRTEC. So now I was actually paying attention.
So here we are, going back to the ears. Like I wanted to in the first place.
After my scathing email to my pediatrician (because no one can talk to their pediatrician on the phone anymore), she emailed me back apologizing. In her first email, and in our initial appointment last week, she said that we could look into PANDAS but she was "pretty young." I am guessing that maybe Catherine is the youngest patient on the face of the planet that may have it? Who knows.
Either way, I am writing this blog post before I email her back. We are still keeping the appointment with the new pediatrician. I am still angry about it. I am still mad at everyone who have said things to me like, "if she had a milk allergy, she would have a rash" or "it's not her ears. Her ears aren't the problem" or "take her out of daycare." I don't know what will happen next. Oddly enough, someone that I work with, that I eat lunch with every day, just had her son diagnosed with PANDAS. But hers was a different story. He was getting into a ton of trouble at school, so she was referred to a psychologist, and from there, the psychologist referred her to an immunologist, and from there, he diagnosed it. She had never even heard of it. What would be the odds that I would know someone whose son was diagnosed? What would be the odds that we might finally be on the brink of what is going on with Catherine?
Until then, we will see what happens on Thursday with our new pediatrician. We will see what happens this week with our old pediatrician. We have Catherine on yet another dose of nasty anti-biotics, so we will see what that brings. Guaranteed, it's a new little girl with a better lease on life. But only for a little while.
Onward...
 |
| This is Catherine on a "bad' day. She insisted her blanket be on her chair while eating. This is right after breakfast, after a full night of sleep (miraculously) and this was about the only peaceful moment we had that day. This is one of Catherine's tell-tale signs that it's going to be a bad day. She looks stoned. Not like a pothead, but like a crack-cocaine addict. This is the look of a little girl who is not healthy. This is the look of a little girl who needs help. Why can no one see that??? |
Tuesday, May 9, 2017
Dedication to Drew
With all of Catherine's issues, we have really put anything for Drew on the backburner, including ANY kind of update, probably since he was seven or eight months old. That's almost a year ago. But Drew-boo, know that we love you very much.
You are the happiest when you wake up in the mornings. You are a complete ray of sunshine, and one of my favorite things to do when you wake up is sneak into your room and surprise you. The look on your face is absolutely elation. Your whole face lights up when you are excited about something, and seeing mom or dad first thing in the morning is definitely the highlight of our day.
You started walking about 13 months, right about the same time as James. You walk just like he did too; high knees and pounding the street with your feet. It's hilarious to watch. You are starting to navigate the doorways, like the sliding glass door and the front door, with ease. However, that makes me nervous because it makes you think you can take the stairs standing up too.
You try to jump, which is hilarious, but you can't quite get it. You love to stick your arms out behind you, lean forward, and "run." That is also hilarious. When you are done eating, you throw your food overboard, which drives me nuts. However, with the nice weather, I am sure the possum in the yard does not mind the leftovers at night.
You are always game for anything. You will play in the backyard by yourself for hours. You want to desperately go down the slide, but we just can't let you do that yet as the trajectory will launch you into the middle of the backyard. You will hate it.
You love to climb things. You love food. You are finally sleeping through the night, but you still wake up once between 9-10 p.m. because you are thirsty. You usually fall right back asleep and stay that way until morning, unless Catherine is in one of her rages. If it wakes you up, it usually scares you, but when she's done, right back to sleep you go.
You have been the sunshine on some really dark days in this household. Sometimes, I think that's the reason why God gave me you. He saw that we needed some comedic relief, some more love, and especially another big, blue-eyed baby boy. I am so thankful you are here, you are mine, and you are loved beyond measure.
You are the happiest when you wake up in the mornings. You are a complete ray of sunshine, and one of my favorite things to do when you wake up is sneak into your room and surprise you. The look on your face is absolutely elation. Your whole face lights up when you are excited about something, and seeing mom or dad first thing in the morning is definitely the highlight of our day.
You started walking about 13 months, right about the same time as James. You walk just like he did too; high knees and pounding the street with your feet. It's hilarious to watch. You are starting to navigate the doorways, like the sliding glass door and the front door, with ease. However, that makes me nervous because it makes you think you can take the stairs standing up too.
You try to jump, which is hilarious, but you can't quite get it. You love to stick your arms out behind you, lean forward, and "run." That is also hilarious. When you are done eating, you throw your food overboard, which drives me nuts. However, with the nice weather, I am sure the possum in the yard does not mind the leftovers at night.
You are always game for anything. You will play in the backyard by yourself for hours. You want to desperately go down the slide, but we just can't let you do that yet as the trajectory will launch you into the middle of the backyard. You will hate it.
You love to climb things. You love food. You are finally sleeping through the night, but you still wake up once between 9-10 p.m. because you are thirsty. You usually fall right back asleep and stay that way until morning, unless Catherine is in one of her rages. If it wakes you up, it usually scares you, but when she's done, right back to sleep you go.
You have been the sunshine on some really dark days in this household. Sometimes, I think that's the reason why God gave me you. He saw that we needed some comedic relief, some more love, and especially another big, blue-eyed baby boy. I am so thankful you are here, you are mine, and you are loved beyond measure.
Just Another Chapter
Last night, I said to myself, "If I wrote a book, it would be titled 'Prisoner in My Own Life.'" And here we are, at yet another chapter.
Since Saturday, we have been fighting yet another battle with Catherine. Up all night, screaming. Aggressive with not only her family, but also with those that have come over to play with her. It's like when we have Good Catherine, she is amazing. When we have Bad Catherine, I cringe.
It has been a war zone, AGAIN. Constantly trying to keep her happy while balancing everything else. If you could have seen my kitchen on Saturday, you would have been appalled. I was appalled. And overwhelmed. Like everything else that day, it was a mess, and was the epitome of exactly how I was feeling. Out of place, disorganized, and chaotic. And the only way to survive is to take it one minute at a time.
If I wanted to, I could write all about the past four days. But it would be exactly like the last blog post I wrote. About strapping on my combat boots and going to war. How James is acting out because Catherine is misbehaving. How there have been more times than I can count where we have "lost" Drew somewhere in the house or the backyard because we are dealing with Catherine's behavior issues.
So instead, I will write about her Special Education meeting today, and the path forward we hope to take. Only because I feel like if I rehash the past four days, and particularly the past 24 hours, I will end up going mad.
So we met with Catherine's Speech Language Pathologist (SLP), the school's SLP, her Early Access Coordinator (who we love and we are so sad to see go). We also met with the school nurse, Catherine's potential special education teacher, who happens to be James' current preschool teacher. How lucky are we that we will have one of the kindest, most dedicated teachers I have ever met not only teach James, but also have Catherine for a couple of years. We are truly lucky in that regard. We are also so lucky for Catherine to have been working with Heather (EAC) and Dani (current SLP), as we feel they have been fighting for Catherine too.
It was surreal to be a general education teacher sitting in on an IEP (individualized education plan) as the parent this time. This time I wasn't just nodding my head and following along, but I was engaged in the conversation about my own daughter. Again, we are so thankful that we have THIS team of professionals in Catherine's corner.
Catherine will have curb-to-curb transportation, meaning she will ride a short bus. I almost have to laugh at this little girl in this big bus, but she will absolutely love every second of it. There will be an aid on the bus to help load her from Christy's (daycare) and the aid will walk her into preschool. She will go to preschool 4 days a week from 8:30-11:30 and she will get specialized services throughout the morning. Mostly one-on-one with the special education teacher for her cognitive delay and one-on-one with the school's SLP. She will then get back on a bus with the aid and be dropped back off at Christy's. I may have a lot of issues with the way our government is run, and the way public schools sometimes function, but in this regard, Southeast Polk has their stuff together. For that, I am so thankful.
I took the full day off work, just so that I could spend the day concentrating on Catherine. Since my last update two months ago, we have been diligently making sure she doesn't get any artificial flavors either, and have been trying to stay away from salicylates, which are acids derived from plants. I have put in a call to the doctor to refer us to a pediatric nutritionist who specializes in food intolerances, who can hopefully help us make sure Catherine is getting the nutrition she needs, as well as identify any other intolerances she might have that allergy testing would miss. This is what I suspect happened with the milk protein allergy, and why she tested positive at one doctor and not at the allergist. Because it's more of an intolerance.
I have learned that food allergies and intolerances manifest themselves in several different ways. For some kids, it's behavioral, and for some, it's a rash. Either way, the further we get from allowing Catherine to have dyes and artificial flavors/preservatives, the more convinced I am that this is what is happening.
If anyone out there is reading this, and you are the praying type, here is what we need prayers for:
1) For a nutritionist to guide us into further investigation of what Catherine truly reacts to.
2) For us, to make sure we continue to be patient and love her with everything we have
3) For James, who is also hurting from this as a big brother.
4) For her special education "family" who will continue to work with Catherine and make suggestions for her. Help them guide her to be the best Catherine she can be.
5) For Catherine. You can tell she does not like feeling this way. She is easily frustrated with herself and as Christy's daughter put it before, it seems like she is angry with herself all the time. With the removal of dyes and flavors from her diet, she has been much happier, and more loving. I hope this continues.
Onward...again.
Since Saturday, we have been fighting yet another battle with Catherine. Up all night, screaming. Aggressive with not only her family, but also with those that have come over to play with her. It's like when we have Good Catherine, she is amazing. When we have Bad Catherine, I cringe.
It has been a war zone, AGAIN. Constantly trying to keep her happy while balancing everything else. If you could have seen my kitchen on Saturday, you would have been appalled. I was appalled. And overwhelmed. Like everything else that day, it was a mess, and was the epitome of exactly how I was feeling. Out of place, disorganized, and chaotic. And the only way to survive is to take it one minute at a time.
If I wanted to, I could write all about the past four days. But it would be exactly like the last blog post I wrote. About strapping on my combat boots and going to war. How James is acting out because Catherine is misbehaving. How there have been more times than I can count where we have "lost" Drew somewhere in the house or the backyard because we are dealing with Catherine's behavior issues.
So instead, I will write about her Special Education meeting today, and the path forward we hope to take. Only because I feel like if I rehash the past four days, and particularly the past 24 hours, I will end up going mad.
So we met with Catherine's Speech Language Pathologist (SLP), the school's SLP, her Early Access Coordinator (who we love and we are so sad to see go). We also met with the school nurse, Catherine's potential special education teacher, who happens to be James' current preschool teacher. How lucky are we that we will have one of the kindest, most dedicated teachers I have ever met not only teach James, but also have Catherine for a couple of years. We are truly lucky in that regard. We are also so lucky for Catherine to have been working with Heather (EAC) and Dani (current SLP), as we feel they have been fighting for Catherine too.
It was surreal to be a general education teacher sitting in on an IEP (individualized education plan) as the parent this time. This time I wasn't just nodding my head and following along, but I was engaged in the conversation about my own daughter. Again, we are so thankful that we have THIS team of professionals in Catherine's corner.
Catherine will have curb-to-curb transportation, meaning she will ride a short bus. I almost have to laugh at this little girl in this big bus, but she will absolutely love every second of it. There will be an aid on the bus to help load her from Christy's (daycare) and the aid will walk her into preschool. She will go to preschool 4 days a week from 8:30-11:30 and she will get specialized services throughout the morning. Mostly one-on-one with the special education teacher for her cognitive delay and one-on-one with the school's SLP. She will then get back on a bus with the aid and be dropped back off at Christy's. I may have a lot of issues with the way our government is run, and the way public schools sometimes function, but in this regard, Southeast Polk has their stuff together. For that, I am so thankful.
I took the full day off work, just so that I could spend the day concentrating on Catherine. Since my last update two months ago, we have been diligently making sure she doesn't get any artificial flavors either, and have been trying to stay away from salicylates, which are acids derived from plants. I have put in a call to the doctor to refer us to a pediatric nutritionist who specializes in food intolerances, who can hopefully help us make sure Catherine is getting the nutrition she needs, as well as identify any other intolerances she might have that allergy testing would miss. This is what I suspect happened with the milk protein allergy, and why she tested positive at one doctor and not at the allergist. Because it's more of an intolerance.
I have learned that food allergies and intolerances manifest themselves in several different ways. For some kids, it's behavioral, and for some, it's a rash. Either way, the further we get from allowing Catherine to have dyes and artificial flavors/preservatives, the more convinced I am that this is what is happening.
If anyone out there is reading this, and you are the praying type, here is what we need prayers for:
1) For a nutritionist to guide us into further investigation of what Catherine truly reacts to.
2) For us, to make sure we continue to be patient and love her with everything we have
3) For James, who is also hurting from this as a big brother.
4) For her special education "family" who will continue to work with Catherine and make suggestions for her. Help them guide her to be the best Catherine she can be.
5) For Catherine. You can tell she does not like feeling this way. She is easily frustrated with herself and as Christy's daughter put it before, it seems like she is angry with herself all the time. With the removal of dyes and flavors from her diet, she has been much happier, and more loving. I hope this continues.
Onward...again.
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