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Anneli

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  1. Thanks Wombat140, that's actually a very good (and obvious!) idea. But, this is such a bizarre disorder. In case this information is helpful to anyone else, here is where we are now: My son's tic has been much, much better. In fact, I haven't been able to catch him with the tic in the last several days although I keep a close eye on him. I thought perhaps the supplements are working. Today, his younger sibling had a well visit at the doctor's and I decided to ask for a strep test, although he has no symptoms at all. Sure enough he was positive. I don't believe he is a carrier, since h
  2. I think that is exactly my problem: I would love to hit it early, but don't know how when we can't get an appointment with a specialist until mid-April. The second culture from the pediatrician's office came back also negative. I also called the infectious disease doctor that we had seen last year after our visit with Dr. L. in the hopes that she could see us, but she just referred us to Dr. L. Sigh. The tic is still so mild and infrequent (except when he is eating) that he went the entire time at the ped's office without showing it, so it is hard to convince the doctor that we have a prob
  3. His father says he had tics as a child. Gpookie, how did you manage to get an appointment with Dr L. so quickly? Or did you already have an appointment time set when the tic showed up again? I tried calling Dr L's office again today, and they will call us if there any cancellations but as of right now, our appointment is set for mid-April. I just feel so helpless. I took him to the pediatrician's office today for another step test, since I was worried that CVS might not have gotten a good swab. The rapid test was negative again and the culture will take another 3 days. Again, he is ot
  4. My 8-year old son was diagnosed with PANDAS last year. He had two somewhat mild episodes with anxiety and ocd where he tested positive for otherwise asymptomatic strep. The antibiotics worked very quickly and took away the symptoms. He was on prophylactic abx until July, but we took him off, since he was doing so great. He did not have any tics during his two PANDAS episodes, although he has had some mild occasional tics since he was 4. In early February, I noticed he has an eyerolling tic. At first, he was doing it 1-5 times/day - or at least that's what I saw. Last week, it suddenly
  5. Thank you to all who replied. At this point, we are leaning towards stopping the abx, mainly because he's doing so great, he seems to respond quickly to antibiotics and that was the recommendation we got from all the specialists that we saw (other than the NIH). I plan to research natural abx though and will consider starting to use them. The ENT we saw is a PANDAS specialist and I've read from other boards that he has performed t&a on many PANDAS children, so we are going go with his recommendation to not perform the surgery at this point. I will say it is making me feel very hel
  6. I am new to the forum, and was hoping to get some advice/opinions on stopping the prophylactic antibiotic treatment for my 7-year old son. In October 2014, he started exhibiting sudden onset OCD type behaviors (germophobia, excessive apologizing) and anxiety. Initially, we thought that this was his response to a recent death in the family, and tried to deal with it as best as we could. He continued going to school, but was begging to stay home every day. After reading about PANDAS, we decided to have him take a strep test about 6 weeks after the symptoms started and he tested positive. Aft
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