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Swim Day

(4.5 ml prozac and a large 1/4 pill of clonidine)

Today Ewen had a good day. The kids had they day off school for teacher work day and so my mom turned the swimming pool heater on. Ewen swam twice and for a long time each time. Then we watched the new Star Wars at their house. The last time he watched the new Star Wars was in the theater on December 17th and he had a bad panic attack afterwards. So today was kind of a good CBT day with the not being afraid of the pool and watching Star Wars and enjoying it then being OK afterwards. I made sure to give him his clonidine at 7pm, during Star Wars so that would help with any extra panic that he might remember because of what happened last time.

When he swam he talked to his little sister once. I have notice that he hasn't been connecting with people very much recently at all, except when he talks to people on Skype when playing his online video games. But his chatting is mostly with Mike and me, sometimes his older sister. But he doesn't seem to be talking as much to his friends or initiating much. It is strange because he was always so social and confident before all this.

Tonight going to sleep though he was a bit forlorn and a bit twitch but nothing like before the clonidine. And he jerks around in his sleep a bit too which I find to be troubling. I hope my baby is OK. It is frightening to see him twitching so hard when his body is trying to rest. He said he needed more clonidine to help him go to sleep better. Hmmm. I told him it was a fine line between getting to sleep properly and not being exhausted the next day. We are up to a larger 1/4 dose and maybe we will take it up to the prescribed 1/2 a pill dose. But he has a soccer game tomorrow 2.5 hours away from home and when he plays soccer I don't want him to have too much of the effects of the clonidine in his system since it brings down blood pressure.

His pediatrician thinks he has PANDAS or PANS because when we looked at his medical chart it showed how he was very sick with the flu in may of last year, with neurological issues during the flu (he had a small seizure with his fever). She thinks that the PANS is a left over virus from that, and that it affected his brain.  She wants to do a blood test to see if his titers are high or not then go from there. She suggested Penicillin shots possibly. If it is something like that I would like to treat it. I hate giving him so much medicine though.


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