poetmom

My ds developed a sensitive scalp and couldn't stand the feel of water on his head (this is a lingering symptom though to a lesser degree) though it doesn't seem he was quite as bad as that, it was very traumatic for both of us and a big, big challenge. In his case, I would definitely say it made a big, negative difference after he'd had strep (in throat or ear) and antibodies were in high gear.

Thanks Nancy. I was looking for some feedback from someone with an older PANDAS child to tell me if they are also seeing a difference. Nice to know you're also seeing less dramatic responses. This is the first time I haven't noticed any response to having strep (or being exposed) so **fingers crossed**. I am definitely grateful, but cautiously optimistic. Do they really outgrow it? That would be a miracle. It's so strange to be able to talk to him about it now. I talked to his teacher today and he said, "so you told her to look for if I started acting looney?" HA He's got a great attitude about it and said, "Maybe this time I won't have ANY PANDAS!" What a trooper! He is on Augmentin for an extended period just to be sure and then will be cultured afterward in the hopes that we've gotten rid of it entirely and it doesn't just ... migrate, which has happened in the past. Augmentin has always been our most successful abx of choice.

I haven't been on this forum in a long, long time, but today feel the need to peek in.... because my little PANDAS man has strep. Ugh. I'm posting on this string because it has the whole crazy background of his original story (in case anyone cares to reference it). He is now 9, turning 10 in March. I know he has residuals...things that have never really gone away, fears, etc. But I'm the only one that sees it. In fact, some of it really gets on people's nerves because they just don't get it. Example: this past summer we went to the beach. His extreme fear of water, which remains, had me on edge, but he was determined to boogie-board with his sisters. And he did cautiously, fretfully, screaming demanding instructions on how to help him, but successfully (oh, the patience it sometimes takes!) right up until the wave knocked me down, him off the board, and I couldn't get up fast enough to keep him above water. I braced myself for the fit he would throw. He was mad at me but saw the wave had clobbered me too, so he marched out of the ocean and sat on the sand...for about 5 minutes when a miraculous change occurred and he decided the ocean was pretty cool and he wasn't going to let one big wave spoil the fun. I digress... I am the sole existing witness to the full extent of his illness (we've moved, so his doctors are new, his teachers are new, my ex is remarried, and his siblings don't have clear memories... in fact, rereading the story I was surprised at details even I have forgotten). And now he has strep. First symptoms night before last, confirmed yesterday at the doc, abs started last night. AMAZING NEWS: no PANDAS symptoms So..... here is my reason for checking in today....... I am grateful. Yes, eternally grateful. I am also terrified, confused, hopeful and waiting. IS HE CURED??? HAS HE OUTGROWN IT??? Did we just dodge a bullet and are incredibly lucky? Is it really just a particular strain and this isn't it? OR..... should I brace myself because even though in the past he just had to be exposed (not actually contract) strep and he would react immediately, is it possible the worst is still yet to come and I've made the call all too early that we are in the clear? What's your experience with a positive strep test and NO PANDAS REACTION? Thanks.