Just introducing myself. I am a mom of 5 kids ages 3, 7, 8, 10, and 11. My 7 year old son has a tentative diagnosis of PANDAS, and we accidentally uncovered celiac disease, and anemia.
He was diagnosed with Anxiety Disorder, nos, parvovirus and influenza b, in Jan 2013 and my husband, myself and my youngest all got strep the same week. 4/5 kids including my son were identified as "carriers" by March, and were not treated until the beginning of May when my son changed.
Initial symptoms were extreme anxiety, panic attacks, a blinking tic, daily pee accidents, and sudden academic decline in reading/writing and math. Brought him to his pediatrician armed with some PANDAS article I stumbled upon. She agreed to treat the strep with 10 days of Augmentin. Siblings were treated as well until everyone swabbed negative.
Initial labs revealed likely celiac disease (ttg of 62), repeated two more times, both positive. He goes for a small intestine biposy next week.
His ASOT was 625 (may), 432 (june), and 257. Was sent to a neuro who ordered an EEG (mildly abnormal), lumbar puncture (I'm looking at a copy of the results but can't really understand them.) MRI of his brain was normal. He's anemic, and often has low wbc as well.
By June he had lost the blinking tic for the most part, and started clicking his tongue. Then talking in his sleep, hearing voices, major major memory loss, and sensitivity to sounds (June/July). Seperation anxiety has set in, and last week he was diagnosed with low working memory and written output disorder. He has daily hour long rages and I have no idea how to help him.
Tomorrow is the first day back at school. I have no idea how this is going to work. He is now starting 2nd grade and can't read or write anything except his name. A year and a half ago he was above average at school and now he is at a pre-k level.
He hides under his desk covering his ears and screaming/crying, he smashes his head on things on purpose. I had a "falling out" with our neuro and now I have 13 pages of csf and blood results that I can't interpret.
All anyone has been willing to offer us is prozac, which we have been declining so far, but we are getting desperate and I'm not sure what to do next. We are in Canada and have less PANDAS friendly resources here that the US I think.
Thanks to anyone who got through that novel. I'm just looking for any and all advice anyone can offer.
-A
