PANDAS - Anyone? Yes. My little brother had it. His strep antibodies were like 5x the normal despite constantly treating his strep infections. He was twitching to the point where he'd fall over and people would think he was having a seizure. Sometime he was fine, it increased when he was stressed or anxious. Originally they thought it was tourettes. He had IVIG (intravenous immunoglobin) which helped for a while. It was really frustrating for him because some doctors just didn't know what was wrong with him and told him it was psychosomatic. He was a sudden explosive onset for sure. He was vocally ticing and he couldn't stop his words from coming out and making associations with what he had said. it was sort of stream of consciousness speaking, and he's really smart so it was interesting to hear. This time period was probably the worst for my family. He was yelling so much he'd go horse and couldn't go to school. He didn't want to leave the house at all either. It was really sad. I think they can test for PANDAS by testing strep antibodies. He also had components of OCD as well. He could go from being totally fine or just a little twitchy to working himself up to the point where he couldn't communicate or he'd fall over from twitching so hard. It was really really tough. Feel free to pm me or anything.  I am still wondering if T had this last spring.  Her symptoms were so much worse!  Her eye contact went nearly to zero ... and really before it was normal.  She was stimming a lot too. It may have just been stress, in her case, but she came down with Strep in September on the way home from China.  I am still wondering if it was related.  Next time she gets strep I will be observing her VERY carefully and mention it to her MD. I wonder if B had this as well.  I've wondered also about meningitis.  Last Christmas she was sicker than any child I've ever seen.  Christmas day I considered taking her to the ER.  Took her in the next day and they said pneumonia.  She did respond to antibiotics, seemed to start regressing after she was recovering.  Part of me really thinks that she was so sick that it did something to her brain and/or ears. Sorry, no experience with PANDAS at our house.  For those of you who don't know what it is... PANDAS stands for "pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections."  Here's a frequently asked questions article about it, which says not just tics but also obsessive-compulsive behaviors can have a sudden onset or explosive increase due to strep. http://www.cidpusa.org/PANDAS.htm It's important to be very vigilant about getting strep diagnosed and treated as quickly as possible.  Better safe than sorry!     I may have posted on this a while back - but know I did not get responses. Anyone have child with PANDAS, or have comments on syndrome? I just read a comments about Tourette's (tzoya, I think) and was wondering about severity/symptoms of Tourette's vs. PANDAS. Maybe I should post under "Alternate Treatments" (even though it is not a treatment). Any feedback?
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