poppy Posted November 4, 2016 Report Share Posted November 4, 2016 I am wondering if anyone has experience with the new Children's Postinfectous Autoimmune Encephalopathy at UA Steele Center or any of the doctors there? I have a young daughter with a complex case of PANS, which includes Hashimoto's Thyroiditis and allergies. Cunningham Panel results extremely high. Looking for multidisciplinary center for coordination of specialities. Thanks for any thoughts. Link to comment Share on other sites More sharing options...
rhyanen Posted November 4, 2016 Report Share Posted November 4, 2016 Hi we drove from a neighboring state so that my 16 year old son could be seen there in the hopes of getting IVIG.. He already had a diagnosis from another physician in AZ, but this was just to confirm it. Staff was ok. I think they are not quite as knowledgeable as I had hoped. RX for antibiotics...yet again. Steroids caused an increase in tics. Was discontinued. I was hoping he would see the sleep specialist and nutritionist as his sleep schedule is a mess and he has limited food intake...he's only 117lbs and 6'1". Please send me a private message and I can give you a more detailed response. Link to comment Share on other sites More sharing options...
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