LaurieVK

My pediatrician and I are having a very difficult time finding either an infectious diseases doctor, a pediatric neurologist, or anyone for that matter, who is interested in helping us treat my DS's PANDAS. Does anyone know of someone whom I can call in the Illinois-Iowa area? I live in the Quad Cities (right on the border of both IL and IA). I would REALLY appreciate if anyone can help!!! It's so frustrating because of the lack of good research supporting this disorder. Thanks, in advance, Laurie

I was just going on lay-people who say things when my kids are sick, like, "Just let it run its course... if you keep putting your kid on antibiotics, their own immune systems won't kick in" or "they will become immune to the antibiotic... it won't work when you want it to if you keep putting him on them." Now, these aren't doctors by any means, but I've heard it enough since I've been an adult that I wonder if there's truth to it! lol

Really??? Well, I stand corrected! I've never heard about that, so thank you for your information. I was under the impression that with PANDAS, the basal ganglia is the area that is affected, which is why you see symptoms of OCD and tics. I just did a little "research" and found that auditory hallucinations can show origins in that area, too. Live and learn- sorry I jumped so quickly into my answer. Laurie I do agree that it is important to rule out any possible disorder but I have to agree with phillypa that auditory hallucinations are a part of PANDAS. My dd has PANDAS and Lyme and has experienced both auditory and visual disturbances that get better with antibiotic treatment. Also, sleep disorders are a symptom of PANDAS too. I think Bipolar and pandas symptoms can look very similar.

Thank you for your reply! My ds has always had constipation/encopresis problems, poor kid. If it's not one thing, it's another! But he's getting better. How do you treat your PANDAS, if you don't mind my asking? It looks like you've had it for a long time. Laurie Lots of P.A.N.D.A.S. kids have GI issues. I'm not sure how many of those are due to sensitivities, but I know a whole lot of us do also have sensitivities. I don't think artificial things like dyes & sugars are good for any kid, but I think they're especially worse for kids who have health problems. I try my best to stay away from dyes & sugars, but they're not completely cut out.

I'm new to this, but really think my 6-year old ds has PANDAS. I wonder what would happen if he took antibiotics on a continual basis- does this make him immune to them? If he needs antibiotics for something else along the way, would they even work? Would it stop his own immune system from working regularly? (So many questions!) I wonder because it seems like the only way his tics go away is when he's on Augmentin (which is harsh on the stomach, too)... he took 3 rounds of it recently and has been off of Augmentin for two weeks now with no return of the tics, but I worry they will come back! He's a strep carrier. Thanks, in advance, for your shared experiences! Laurie

No, auditory hallucinations (voices) are NOT a part of PANDAS. Those are in a very different part of the brain. (I'm a child mental health therapist, just so you know my credibility.) It sounds like he's having some very significant symptoms that need to be assessed by a psychiatrist quickly. Especially if he starts having what's called "command hallucinations," where he hears a voice or voices that tell him to hurt himself or others. Those can be very dangerous, so don't mess around with that. It's obvious something's wrong with his chemistry, which is what's causing this. Is he on any medication that may be causing this? If not, is there a family history of Bipolar Disorder (used to be called Manic Depression), Schizophrenia, or Schizo-affective Disorder (mood and psychosis issues)? It sounds like he is pretty sensitive in some areas, which is why he's showing many different signs that aren't in one category (OCD, tics, hallucinations, "dark side" = does this mean depression?). Is his sleeping pattern irregular? If so, that may point more towards Bipolar, especially with the behavioral symptoms, hallucinations and ups and downs. Poor guy... just get him evaluated and tell them everything- they will figure it out. You may want to Google "Bipolar in Children" and see what you can find- the symptoms in children can look very different than the ones in adults. If it's that, he will need medication to stabilize his moods. If it's not, then you at least ruled that out. Act quickly though... poor angel is suffering. Good luck~ Laurie

Is there a correlation with PANDAS and dietary sensitivities?