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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 he has been tested a number of times in his life, and this was only the second time ever that he has tested positive. So, this was probably our trigger. What I don't quite understand though is why my older son had the tic as very mild for a few weeks, then it peaked and resolved (seemingly) while his brother was still positive? We will still keep our appointment with Doctor L. in mid-April, but unless the symptoms re-occur, I am not really sure what she can do for us at that point? Just hoping that things will continue to improve....
  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 problem. Her comment was just that childhood tics are very, very common. He is also otherwise very healthy, happy and is showing no signs of anxiety or ocd. Right now I am just trying to watch his diet, continue the magnesium and added back his vitamin D supplement, which I realized I had dropped some time ago. I ordered the Tic Tamer just in case it gets worse and/or if he ever gets bothered by the tic, but don't really want to just treat the symptom as long as he is happy.
  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 othewise happy and healthy so I am not sure I need to go in full panic mode quite yet, but I worry about it getting worse. The magnesium supplement has not made any difference so far.
  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 became worse, and now he is doing it several times an hour, and even several times a minute when he is eating. It doesn't bother him at all, and he is very happy and is showing no anxiety. He had a strep test on Saturday, but both the rapid test and culture were negative. I started him on magnesium supplement on Friday, but so far see no change. How quickly is it supposed to work if it will? We live in the DC area so I made am appointment with Dr. L., but the earliest follow up appointment available was middle of April. Do you have any advice for me what to at this point, other than wait? Part of me thinks that I'm overreacting and this could be just a transient childhood tic not related to PANDAS, but the other part is very worried. I would appreciate any advice. Thank you.
  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 helpless that while everyone has confirmed his diagnosis as PANDAS, the recommendation seems to be that we do nothing. I think it may be because he is doing so fine now, but I worry for his future. Or maybe there really isn't anything else to do than wait and see. Meanwhile, I am trying to learn to live in the moment and appreciate every good day that we have.
  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. After 10 days of Amoxicillin, he returned back to (at least very close to) normal and we thought we were done with it. In February 2015, he suddenly started asking repeatedly if someone had spoken to him and checking that he had heard everything correctly. He also said that felt like he had to repeat what he had heard in his head. The next day he had a positive strep test and received antibiotics. The following week we saw Dr. Swedo at NIH who diagnosed him with PANDAS, and prescribed 30 days of Augmentin. She also recommend CBT and prophylaxis at least for 6 months and possibly through the elementary school years. My son showed improvement quickly after starting the antibiotics and was back to very close to baseline within the next 5-6 weeks. All in all, the episode was very mild and did not seem to cause him much distress. He happily went to school the entire time and did not show any symptoms at school. Since then he has been on a daily prophylactic dose of Amoxicillin and he did 7 session of CBT. We are also now giving him fish oil, vitamin D supplement and probiotics daily. In the last few weeks, we’ve seen 3 PANDAS experts (Neurologist, ID doctor and ENT) in the area, who all confirmed his diagnosis but recommended stopping the long term antibiotics. He also was considered only “borderline” for benefitting from tonsillectomy, so we have decided against the surgery. The current plan is to stop the antibiotics after the international trip that we are taking this summer. After that there doesn’t seem to be any other plan than to just wait and see. I want him off the antibiotics, but am also very nervous about it. Right now he is very happy and healthy and I want to keep him that way. Any advice/opinions from those who’ve btdt? Thank you very much in advance.
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