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.