Yoga Sucks

I don't know if it is in my nature to actually be a yogi. But I can't think of any other activity that will get me moving, stretch my body like it needs to be, but below impact due to the fact that my hip sucks.

And so, here I am, 8:30 at night, stretching myself into weird positions on my bedroom floor while watching Adrian the YouTube sensation.

But here's the thing, I did it. I did the whole thing. every once in awhile I had to take a break, because it is actually hard. You wouldn't think you'll get would be that difficult, but when you haven't moved in several years like me, it is truly hard. But I got all the way through it, and I did yoga two nights in a row. Go me.

and now that I'm going on choir to her, I just have to make sure that I don't eat crappy, and I actually stick with the yoga routine. Wish me luck.

Battle of the Bulge: Post-Kids

Well, here I am. Writing about the battle of the Bulge. AGAIN.

Almost two years ago, we moved. And since I am a emotional eater, I ate. A lot.

And I gained. A lot.

All of a sudden, I was approaching 170. What? How did that happen?

1) I moved less. I concentrated less onh kids and more on packing up for a move.
2) I got a new job. Cue emotional eating ALL THE TIME.
3) I had a new co-worker.
4) My kids had new schools.
5) Drew had a new baby sitter.

All of things led to me eating and over the course of about 1.5 years, I have gained weight. A lot.

I don't move as much as I used to. My body hurts more. I snack more often. I still eat a healthy breakfast and healthy lunch, but I eat too big of portions at supper. All in all ai am doing just enough of the wrong thing.

I tried yoga tonight. It sucked. I thought at one point I was going to pass out. But I realized I tried a yoga that was absolutely way too difficult for my first time. Hopefully, I will be able to figure out how to find a first time yoga video on YouTube. Hopefully.

So this is my first post for a new me. I am ready to start looking out for ME and not everyone else.

Onward!

Frustrated: PANDAS Update #7

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.

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.

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.

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.

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.