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so -- i've been posting about our disastrous school situation. . . still unsettled and we are heading for private neuropsych testing.



a friend of mine has been helping . . . her son had 'behavioral' trouble from kindergarten (no diagnosed infections -- i think you know what i think -- but not the point of this post). . . when in 3rd grade he was finally tested, his IQ scores were about 155. . . his written IQ was about 70. poor thing suffered through 4 years of school with the whole focus on his inappropriate behaviors.

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Just my two cents here, I am not sure of the specifics of your disastrous school situation. For my son, a school setting was almost a guarantee he would have a reaction. Of the 2 preschools we had him in, the one with a bunch of kids in a small space made him go out of his mind. The small one, with just 5 kids, and a huge room, was manageable. When we started kindergarten, it was still "small" under normal definitions. but there were 15 kids in a very small space. It was a total no go. He is a very social kid, loves other people, and is smart as a whip. But put him in a confined space with a bunch of kids, and he displays every PANDAS behavior he has--fight or flight, anxiety, compulsions/defiance (doing what you just told him not to do, compulsively. teachers love that).

It was heartbreaking to me, because everything about my kid makes me know he would love school under normal circumstances. But, we don't have normal circumstances. There was nothing I could do, or the school could do, to prevent him from having that reaction. I suspected a combination of bacteria/virus triggers in the environment (all those germy kids) and also stress. We pulled him out, and are homeschooling him (something I never thought we would do, but sort of love, as hard as it is). Our doc consulted with a PANDAS expert about what we were experiencing, and she told us that she was not surprised--that a school situation may just be too much for a PANDAS immune system to deal with. Our son is still very young (6), and she said if we could swing it, having him homeschooled til he is a bit older would be a good idea, just to prevent more reactions. It's not for everyone, but it made me feel better to know the school situation was not our fault, per se--and nothing we could do was going to make it tolerable for him.


We did put him on some anxiety and adhd medicine after his time in kindergarten, just because he seemed miserable and not himself. I don't know that it has helped, I think being away from the environment has helped the most. Dealing with a school situation has always added so much stress for us, and I for one am thrilled to not have to deal with it anymore. The teachers can be wonderful, but I know it exhausts me to deal with understanding PANDAS, so I can't expect them to be able to handle it on top of everything else they are dealing with. My mantra is low stress--so far, it's been better for him than psychiatric medicine. Hope you find answers, and wonderful people to help you navigate this.

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