Kaviar

Does anyone else feel like you're constantly bringing your child to a stream of different professionals? The following are currently involved with my son: Pediatrician (of course) Pediatric neurologist Psychiatrist PANDAS specialist Behavior Analyst SLP PT OT We've had an ENT, several psychologists, actually a stream of behavior "specialists" (Ha!), and numerous therapists. We're about to seek a GI specialist to address our son's GI issues. And, of course, it feels sometimes like the more education a professional has had, the fewer answers they have for us. We've had to do the majority of research on our own and sometimes we feel like our son is kind of a guinea pig with everything we've tried to help him. Of course, thank God for the internet and being able to consult with others. I can't imagine how this life would have been without being able to network with other parents!

Thank you, Vickie! My son had strep throat 3 times this past winter ... was first given Omnicef, but he tested positive again 4 weeks later, so they put him on Amox. Then again with amox. about 6 weeks after that be/c his symptoms reappeared (though he tested negative for strep) and the pediatrician suspected PANDAS. At this point, I'm thinking he might have a perianal infection going on ... but my son has had GI issues his entire life, so God only knows what's up with his poor lil bum. *sigh* I appreciate the urging to continue seeking a PANDAS specialist. I'll look into the one in MD (maybe he'll even accept our insurance! ).

*hugs* Sorry to hear it. FWIW, whenever my son is first placed on antibiotics, it's like his symptoms exacerbate significantly (which doesn't seem possible before the antibx) for the first week, and then *flick* it's like a light switch turning off and he's wonderful again. Typically. Until the next bout.

Thank you for the replies and the link (though I can't get it to work ... will keep trying). We live in Southeast PA (oh, about an hour south of Philly), so yeah it's not very easy to make the trek up to the PANDAS specialist we found. Did I mention we have 3 kids altogether (DS8, DS6, DD4)?

My son is like yours AND we just got a diagnosis of PANDAS. Add aggression to the mix of the symptoms you've described ... as well as severe speech apraxia ... and that's my son in a nutshell. Our dear child is on Tenex as well as Risperdal (0.5mg in pm) and Prozac (2ml in am). He has had severe bowel issues since he was 4 weeks old. We found he was allergic (confirmed by allergist) to soy, dairy, yeast, eggs, and corn. Removing those items from his diet helped the constipation somewhat, but only after we added daily probiotics (we use Pro-Bio Gold from Kirkman Labs) to his diet did we see daily BMs. His BMs are occasionally nasty (messy, large), but at least they occur daily. Our son has ABA, which has significantly improved his ability to learn and communicate and function (of course, now the school wants to discontinue paying for it ... the only approach that has ever helped him). My son is 8 yrs old and we were relieved to get the PANDAS diagnosis, but we've only had the dx for a month and I don't think we're addressing it as aggressively as we could be.

Hi All. I am new to this forum, so forgive me if this question has been covered numerous times before. How do you get your MD on board with prescribing a prophylactic dose of antibiotic? My son is 8 yrs old. He has autism and was diagnosed with PANDAS about a month ago (finally an answer to his cyclical wild OCD and emotional lability and tics!) by a psychiatrist who sent her eval and diagnosis to our pediatrician. The psych suggested to continue giving our son amoxicillin whenever these behaviors arise, as we've had some success with amox. in the past. For our most recent bout with PANDAS, the MD gave a 21-day course of amox and my son only had 2 days of "normalcy" around day 9, but ever since he's not been doing well. I see most people here suggest zithromax as a good antibiotic to use ... and even a prophylactic dose of zithro would be better. But how do you convince a doctor to give it a try? I mean, do you just call and say, "I'm on this online forum of PANDAS parents and everyone there suggests prophylactic zithromax. Please write me a script!" or what?