Suzan

Hi! I live in Charlotte, NC. He is located in Concord, NC right next door. His name is Dr. Corbier and he is a pediatric neurologist. He was recommended to me by my pediatrician who is a Dan! doctor and was the #1 recommended by their office to work with kids like my dd. I plan on taking my other dd too since she has ADHD behavior and he said he has some tests he'd like to run on her too, including PANDAS I'd bet since she has had the same strep issue.

My dd has been on depakote and tranxene for over a year for her seizures. Could this be supressing her PANDAS symptoms, if she has PANDAS? I will discuss with her neurologist but he is thinking of taking her off if we get a clear EEG. Thanks! Susan

Thank you for your reply! I can't say that I have seen an improvement but only because I was not thinking in these terms before. I swear I've been wracking my brain trying to remember but I just can't! I totally agree with you on the neurologist luck. This guy is really good. Even if it does not turn out to be PANDAS, I love having a doc who knows about this type of thing. I will try the ibuprofin and see if it helps. I appreciate hearing about your son and his symptoms. It really helps. Thank you Claire. Although I don't want her to have PANDAS, I am glad to have the feedback about your son and the issues he has. It does sound similar to my daughter. Thank you for the information on Michele Cunningham. I will bring that to my neuro. He is the type to be open to that. I know I'll be back with more questions. I don't know how long until I hear from the neuro about the test results. Susan

Hello, thank you for allowing me to join this forum to ask questions and gain some knowledge about PANDAS which I have never heard of until yesterday. My daughter has recently had recurring vaginal strep (one was in February and one in March). She's had strep before, earlier in life, maybe a few years ago. She was just cultured for it in April but it was negative and it turned out to be the flu. My daughter (6) has the following history: sensory processing disorder, diagnosed at age 3 epilepsy, staring, non-convulsive seizures gluten intolerant, gets very sick when she eats any gluten. Celiac dignosis is unknown this time malabsorbtion issues, probably from the gluten very small for her age, probably from the gluten Impulsive behavior (puts her feet in your face, pokes at you, always picking at you), may not be able to stop talking, etc. Can't wind down to go to sleep Tosses and turns in her sleep ADHD behavior at times Has some age regression issues at times Has trouble knowing what to eat like she doesn't have a taste for anything and is very picky about food She has no tics or obvious OCD behavior that I could tell (knowing not much about either). Except in retrospect I have observed: Everything has it's proper place or order. If someone is doing something in the wrong order that really bothers her Sees patterns easily (very good at puzzles) Has been known to have her hand fly out and hit me in the face seemingly involuntarily (only remember this a few times) Has been known to have inappropriate gestures (grabbing someone's breasts for example) saying she didn't know she was going to do that. I don't know exactly what my questions are but I am wondering, does this sound like PANDAS? I have not noticed obvious behavior changes related to strep, but I have not been looking for that. I would have looked at what she ate for example instead. Must obvious tics be present? I'm kind of scared. I always would rather know so something can be done to help but from what little I've read, it seems there is not much that can be done to help her. Any questions that come to your mind that I should ask her doctor? Anything else I should look for or think about whether I've seen it happen in the past? Thanks! Susan