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.
Sunday, July 23, 2017
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.
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