hopefulinsc

I think that's a great idea - especially since I am in need of finding a doctor that has some working knowledge of this - not just what they've read in medical journals. Thanks.

I'm curious. Has anyone heard about any children that have gone through puberty and then not experienced any more problems associated with PANDAS? Or, have you heard of anyone having a few episodes and then none at all after that? I'm just curious about the possibility of this and was wondering if anyone had heard anything. When we initially took our daughter in to the pediatrician, she indicated that there have been children that have had one time occurences of Pandas related symptoms. However, after being on this forum for sometime, I have not seen anyone post anything like that. Please advise. Thank you.

Thank you. I do not know what DAN stands for. Please advise. Thanks again!

Can anyone recommend a good doctor in the Charlotte, NC area that deals with PANDAS? We have been to several doctors in the area; all of which have not personally dealt with a PANDAS patient, which makes getting help for this very difficult. Thank you.

Hi: Yes, my daughter started in with this in June of this year. She is in her 2nd mild episode. Both times, we noticed very dark circles under her eyes (she still has them currently). I believe that there is a definite correlation with the dark circles. She also experienced stomach issues. She complained nearly every day about her stomach bothering her; however, it's not debilitating; just enough to make her mention it - perhaps 2 to 3 times a day. She has stopped complaining about her stomach for about 7 days or so. We went thru this last time she went into remission and at that time the dark circles went away. We are hoping that is the case again. I did mention the dark circles to the pediatrician. They said it could be allergies....... By the way, she does seem to have a very mild vocal tic that if you didn't know her you wouldn't even notice. I asked her if she was doing it on my purpose - she said sometimes "yes" and sometimes "no". The only time we notice it is when we are doing homework or reading and it's not all the time.

Why did you have this test done? What were your child's symptoms? Just trying to find out if this test would help in our case. Thanks.

Yes, that's a definite symptom for my daughter. The headache and recurring stomachache. The headache doesn't last long, nor does it seem to be that bad. However, she frequently has mentioned it. But, it seems the stomach issue is the more recurrent theme. Does your child get that as well?

That sounds very similar to what we went through with our daughter in July. However, we couldn't get anyone to listen to us or even believe in the remote possibility of P.A.N.D.A.s The doctors weren't even remotely concerned about the behavior change. Do you happen to live near Charlotte, North Carolina? We would love to get to a doctor that knows something about this. Incidentally, our daughter also tested negative on the quick strep test, but positive on the culture. However, this test was only done because we requested it (after I had gone on line and done some research as to what could cause such abrupt behavioral changes). The pediatrician didn't put 2 and 2 together that there might be some asosciation between strep and her behavior. We had a complete 2 week remission and then she got her HEP A booster shot and now we are in another episode (less severe than the first). We have a neurologist appointment on Thursday and we are hoping someone can give us some definitive answers on how to go about treating this. I'm glad to hear that you have direction as to how to handle your son.

Trying to get an answer. Has anyone ever experienced their child suffering from short and long-term memory loss. My daughter seems to be on her 2nd episode (undiagnosed, as of today) of P.A.N.D.A.s (OCD) This 2nd time around is much milder this time; but, the behavior seems to be more regressive and hyperactive this time. (we believe, but don't know for sure that the 2nd episode was brought on by her HEP A booster shot). What I'm trying to find out is if short/long-term memory difficulties are not unsual with this. Does anyone know if this is not unusual; and, if not, if the memory loss is permanent? Also, has anyone heard of anyone totally going into remission on this after a few episodes? Every hopeful, but very curious about this. Please help with an answer on this. Appreciate any help.....

Did you find out any information as to whether this could be linked to Fifth's Disease? Our daughter had Fifth's Disease in May and our problems with what we characterize as OCD/Pandas began in June. We got her on antibiotics and all the symptoms went away. We are now in what we believe is our 2nd episode - started on about 9/1 or so (she had a Hep A booster shot on 8/28). We don't know if the start of the symptoms is a coincidence to the Hep shot or if she got sick from our neighbor's son. At any rate, your post is the first that I've read anything about Fifth's Disease. Did you get any info. on that? How is your child fairing now?

Lurker: I have seen no information on line relative to whether these OCD symptoms and/or tics produce and permanent lasting effects in terms of any brain damage. Do you have any ideas or information on this subject? The worse that we experienced, and we are hoping we are now on the tail end of this episode, is the regressive behavior and hyperactivity. I know what you mean about "wacko". I think I'm aging prematurely with all of this. The first time around, I couldn't eat, or sleep and was totally preoccupied with this. It's terrible and I hope the medical field is trying to work on figuring this out. I can't believe that the pediatricians don't even know anything about this. I think that there are probably many children going undiagnosed due to ignorance on the part of the pediatricians. Hopeful in sc

Thank you for the valuable information. We just heard back from the doctor relative to our daughter's blood work and throat culture. The throat culture came back negative and they indicated that the ASO titer and AS Dbnase (not sure if I wrote the 2nd one correctly came back within normal levels. The first time she was in fact diagnosed with strep, however, the culture was scant. They did prescribe antibiotics and all the symptoms went away. She was back to normal. This episode is much much milder than the 1st one and we are actually wondering if this was brought on by the HEP A booster shot that she received. The first time we went thru all the OCD symptoms. However, so far, this time around we are seeing confusion, memory impairment and hyperactivity. Otherwise, she's in good spirits (not so, the first time around). But, there is no doubt about the fact that something is definitely going on. Do you know if this can be brought on by immunizations? How does one find a doctor qualified to make a diagnosis? I feel like I know more about this than most doctors. She has been, up-to-this-point, a very happy, healthy little person (she's five, soon to be six). Any feedback you can provide would be very appreciated.

Hello: Thanks for the advice on who to see. As far as your question is concerned about the tic - so far, we haven't seen that yet. But, she's definitely got the hyper thing going on (not excessive, fortunately, but it is a noticable difference in her personality). We're really hoping that what we're seeing so far this episode doesn't get any worse. We're probably into it now for 12 days. She's been on antibiotics for two of those days. We probably could have been on antibiotics sooner if the pediatrican was even remotedly interested in what we had to say. How does one go about finding a pediatrician that has working knowledge of PANDAS? How do you go about finding out if you're a carrier? Do carrier's still come down with strep? Both my husband and I have both had strep throat in the past. The last time that our daughter came down with this, we were all tested and the quick test and culture came back negative for our son and the doctor didn't send my throat swab out or my husbands, which now we realize was a mistake. Is it inevitable that she will develop a tic? Or, do some children only develop OCD symptoms. Thanks so much for your help.

wow, I'm a new member as of today. Your post made me cry. I am so happy for you that the medication is working for your daughter. Our daughter hasn't yet been diagnosed with P.A.N.D.A.s, but based upon all the research we've done, I can't see how it could be anything else. We are dealing with the OCD side, rather than the TIC side. But, I completely understand how you were feeling and what you were doing as I have done the same thing. I've spent every spare moment on the computer, researching, researching, researching. I am so drained.....but, apparently, I know more about this conditon that the doctors (how said is that)... Anyway, I hope that the medication continues to work for your daughter and I'm so happy that you are back to having fun again. Really makes you appreciate everything more - doesn't it?

I am a new member - as of today. My daughter developed classic OCD symptoms out of the blue. We had no idea what was going on. This goes back to June '08. I went on line and did some research based upon the behavior she was exhibiting. Since it was sudden and abrupt onset, that brought me to make inquiries into P.A.N.D.A.s . I then made an appointment with the pediatrician. She had shown very mild strep symptoms, which at the time, we made no connection to. She didn't run a fever, but she complained of a headache and stomachache, she had a sore throat for one day, she had loose bowels, as well; however, that I attributed to the heat. At any rate, once I discovered after doing research about P.A.N.D.A.s that this could be strep related, we took her to the doctor and told the very disinterested pediatrician our concerns and thoughts. They ran a quick strep test that came back negative, told us that she looks and is acting fine and that it's probably just a little virus. Wasn't the least bit concerned about what we had to say about the behavioral issues. Two days later, we were beside ourselves and went to the ER; what a big waste of time and money. The ER doctor was even less interested in what we had to say. That was on Sunday, on Tuesday, the doctor's office called us and told us that the culture strep test came back positive; although scant. Antibiotics were prescribed and she fully recovered from all symptoms. However, the symptoms started again around 9/1 or so; subsequent to being exposed to the 1st little boy that we think she got strep initially from, but she had also had a Hep A booster shot on 8/28. So, I don't know if the booster shot triggered anything or not. However, we brought her to the doctor on 9/1 for the complaint of a headache and stomachache. A strep test was done and it came back negative - both the quick test and the culture. However, we took her back again and indicated our concerns (we got the same pediatrician that initially didn't listen to any of our behavioral concerns). Again, the strep test came back negative - quick strep and culture. I communicated with the pediatrician and indicated that we went thru this all before and all the behavioral changes that we saw on the 1st episode completely went away after the antibiotics. She wouldn't do anything for me. Told me we needed to get in to see a neurologist and gave us an appointment that was 3 weeks away. She didn't give any interest about the fact that we felt this was P.A.N.D.A.s related or anything. I even dropped off paperwork for her to review; again, that was a waste of time. As a side note, when we first spoke with this same doctor, she told us that we should see their specialist who deals with OCD. He couldn't have cared less! He didn't even listen to what we had to say, nor did he make any file notes. I cannot believe that these people go into this profession - it's disgusting. Anyway, clearly, as you can see, I needed to get all this out to someone that would listen. I find your survey interesting and will defnitely participate. Our daughter is now in her 2nd round of OCD; however, so far, it is much milder than the first time around; but, I don't know if that' s because the 1st time she had strep in her system for a longer period of time and her body produced that many more antibodies....There is so much research to get done on this. I don't think I've ever been this stressed out in my entire life. Anyway, thanks for llistening (reading)... and I'll do your survey. Glad to hear that you are recovered..... By the way, does your son who has OCD have any memory issues? My daughter does and this is the most disconcerting. One example of this: She and her father went in the fronf of the house to give this little frog some water; they both then came in the house and I asked her "did you give the frog water"? she looked at her father and said, I don't know, daddy, did we give the frog water? I haven't read too much about any memory issues and was wondering if you have any issues with that with your son..