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LMama

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  1. Sending hope to new parents out there struggling. There is hope. My son is better now. He’s almost 17.
  2. Wow. That is incredible. How often does he take the abx, and does it cause any stomach problems? Also...So is it safe to say that with a score of 137 he DOES have PANDAS and not tourettes or child onset ocd? Our pediatrician does not seem to know a lot about PANDAS, but has been open to learning. He takes augmentin twice a day. He also takes two probiotics a day. No stomach issues. He didn't have any tourettes symptoms, only OCD. My other son has PANDAS and that is why is why diagnosed so early. I am 100% sure it was PANDAS. He has no more symptoms. I don't believe in child onse
  3. Wow. That is incredible. How often does he take the abx, and does it cause any stomach problems? Also...So is it safe to say that with a score of 137 he DOES have PANDAS and not tourettes or child onset ocd? Our pediatrician does not seem to know a lot about PANDAS, but has been open to learning.
  4. Thanks for your perspective. We just don't know what to do, but that is EXACTLY what my worries have been... that these exacerbations will get worse with time. I am certainly open to trying to pursue the route of prophelactic abx. I hope that with the results of this test, perhaps our pediatrician will be open to this. Thanks again.
  5. Hello. My 6 year old son just recently had a mild exacerbation of vocal and motor tics and mild ocd after an ear infection (no strep). He was on a 10 day course of abx, and currently has very mild throat clearing and hopping. Symptoms are almost resolved. His symptoms are thankfully very mild. We sent his blood in to Dr. Cunningham. His results just came back. His level was 137. They told us that 91 is normal, and that 120 and up is positive. My son's symptoms have been super mild on every occurrence except for the first episode when he was about 4 and a half. His symptoms also always
  6. Hi Faith, Let me see. Yes, he started with the mild cold, and within days we started seeing some slight ocd type behavior (the hopping over door entrances and stuff). Usually we see tics, but this time, it was more of an anxiety ridden hopping behavior. He also has mentioned needing to even himself up by touching things a certain way. As I said, his symptoms are so very mild. My husband and I are the only ones who really see it at this point. (He has had one very severe episode...the first one we saw in May 2008). So anyway, it's odd, literally within a day or two of starting abx he seems to i
  7. They can do a nasal swab to check for strep in sinuses. I never knew that. It's frustrating that the doctors have never suggested this. Thanks for the info!
  8. Thank you all for your responses. I am beginning to realize that these recurring "10 day prescriptions" for abx are not enough. We keep coming back to symptoms, albeit we have long periods in between. Yes, it very well may be a sinus infection. You're right! And I have read here that strep hides in the sinuses as well. I have him on 10 days of abx now, and he is much better. Still some very mild ocd there...evening out , some hopping over doorways and entrances, etc. but for the most part, it is not "bothering" him as much anymore, and it is not as noticeable to anyone other than mys
  9. I agree. And I know this isn't the popular opinion here, but I like the name PANDAS because to me, for my 6 year old son, it is a name that is familiar and safe. My little PANDAS boy. It is affectionate, and when he flares up, I just look at my sweet boy and somehow the name PANDAS conjures up an image that is sweet and safe... even though he is struggling so much. I don't know how to explain it. I have felt such intense sadness when he was at his worst. He doesn't know what he has yet, but he has heard me talk about PANDAS, and it is a name that is safe and familiar to him, so he doesn't thin
  10. Where about in Iowa do you live? So few midwest posts. We live near Des Moines. A sharp young psychiatrist, Dr. Sasha Khosravi connected our son's "array of dots" and suspected PANDAS. He referred us on to a Dr Stephen Elliot at Blank Children's. After a year of Dr. Eliott's insistence that penicillin WILL WORK (it wasn't-not even Bicillin injections), we ended up in Chicago with Dr. K. I do know that Dr. Khosravi and Dr. K have visited at length not too long ago--I hope our son can "help" trx in Iowa. Let us know how the other two contacts work out. Dawn I am sorry. I am
  11. Your comments are of great help! Thank you. I hope your son continues to improve!
  12. There are several threads here about what materials you can take to your doctor regarding PANDAS, and what testing can help support your contention that, irrespective of a positive strep test (or not), your child may be experiencing PANDAS. From what you've described, it does sound like PANDAS to me, especially since you've seen both OCD and TS behaviors during exacerbations. Although it is not at all considered to be a "definitive" test, we were able to convince our regular pediatrician to go with a long-term abx treatment with an ASO titer test that revealed strep titer levels about dou
  13. Except that Dr. Cunningham's lab is closed for the holidays! Thank you for your response! I emailed them last night, and Kathy emailed me back and said that as long as we have the blood spun and the serum pulled that we can freeze it until the 4th when they return.
  14. Ok, so I am feeling confused. The first time we really saw severe symptoms (multiple motor and vocal tics, and what seemed like very slight OCD type behavior) was after a strep infection (within a month of strep). He was on abx for 10 days, and then it took about 6 months or more for the behaviors to go away. Since then, we have seen some very slight OCD type behaviors emerge a couple of times, but we have been able to treat with antibiotics, and it ALWAYS seemed to resolve with the abx. So we really thought it was PANDAS. On a regular basis, his symptoms are pretty much not there. I know we a
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