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PANDAS, Prozac, Buspar, Tics and Staying Positive



Good morning. It is Friday, 8:30 am and my mom came to the house and took our 6-year-old to school since DH has had to leave early this week for work. Both Ewen and Amira are still asleep. I'm sitting in bed on the laptop, letting them sleep because Amira was up in the night a couple of times and I want Ewen to have lots of time not twitching, which is only when he sleeps.  He did fall asleep last night at 9:45 though so I think now we are going on 11 hours! That is good since he was up the night before at 3am and didn't go back to sleep after that.

Both kids will be home with me today too since I told Ewen he could start school on Monday, and Amira's tutor's daughter is sick. So I won't be getting much work done I suppose today. Ewen has CBT this afternoon too which is good.

I don't know if bringing down his medicine dose to 3.5 ML's will ease his tics or not. I look up sudden panic disorder online and I can never find a match of exactly what happened to him. But when I Google, sudden onset of tics all I find is PANDAS, which is strep of the brain and it is something that happens to kids after they have been ill. His pediatrician wanted us to treat him for PANDAS anyway because all of the other pieces fit except for the fact that he wasn't ill before the onset of the panic and tics. So we gave him antibiotics for 10 days, but then DH and I decided to stop that because it seemed like there were too many medicines in the mix with the propranolol, inositol, prozac, antibiotics and probiotics. It was impossible to know what was making him feel good or bad at that point. So we took away the antibiotics and probiotics. But now I am wondering if those were the most important.  I would hate to give him antibiotics though if he doesn't need them, and have his body build up a tolerance to something he may need in the future. So we don't know what to do. His psychiatrist said that if he wasn't sick first then he doesn't have PANDAS, which is another reason we took him off the antibiotics. His pediatrician treats a lot of kids for it too and we didn't want her to be prescribing him the treatment to be a part of her test plan.

Perhaps we should do it. If Ewen doesn't get comfortable perhaps it is because he has this PANDAS business. But he didn't even test positive for strep, and he never has actually.

And then I worry he has a brain tumor, but that is probably just anxiety talking rather than reason. But he has had other weird things in the past, like Alice in Wonderland Syndrome and sleep walking and night terrors...then this sudden onset of panic and anxiety. He is just a Brilliant and weird kid neurologically and I hope that we aren't missing anything by not testing for a brain tumor. But we can't just give him something as serious as an MRI to calm my mama fears. It has to be medically warranted.

I want his huffing and patting to calm down. I want him to be able to sit and relax for a moment without having his brain occupied. Thank goodness for sleep, which is what he is doing right now.

So I gave myself a challenge this week. I decided I am not going to say anything negative to any family member about anything, for 4 days. I think that will help DH. We have to stay positive or we will end up falling to bits. Anyway, through it all, we are very fortunate that we have smart, sweet and amazing kids. Amira is doing fantastic on the Buspar with no side effects and she has stopped sobbing every day twice a day. She is calm and happy. That is wonderful. Maybe that is what Ewen needs too?

I just heard a huff. I guess that means that Ewen is awake.


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