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tinaw

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  1. Hi rhyanen, thanks for checking in. The blood work showed that his strep titers are still high. He also had positive IgMs for Rocky Mountain Spotted Fever and brucella. The doctors don't agree on whether or not he actually has those, or if they are false positives. However, he is on three new abx, which would treat all three infections if in fact he has all three. He is on more supplements than I can count and is now gluten and dairy free and low sugar, which is incredibly hard as he was already a picky eater. We have been able to get him to the doctors office twice, with large a
  2. glad to hear your son's doing better
  3. Thank you for posting this. My DS is 15 and we are feeling particularly down and discouraged right now. It's great to hear that there's hope. I will keep your son in my prayers for continued progress.
  4. Update: We finally got the bloodwork done on my son, but it was a long hard road that has left us exhausted and fearful. We had tried Xanax in the spring but to no avail, but on the advice of a dr who's a friend, we tried again at higher doses. Finally, we found a dose that made him kind of loopy and took away some of the anxiety. We arranged for our dr friend to do the blood draw at home, got a script for lidocaine cream, had our dr friend come talk to him (which he tolerated but did not participate in), and generally prepared him as well as we could. The morning came - and he refused
  5. rhyanen, thanks for your response. I'm sorry for what you're going through. Thanks for your suggestions. It sounds like our boys are similar! Is he able to handle any home schooling?
  6. Thanks everyone for your help. Laure, I am happy to hear your daughter is doing better, it gives me hope. I have an appointment for him tomorrow, which I'm sure he won't be able to go to, but hopefully the doctor can prescribe something else. I am going to bring your suggestions.
  7. Hi, I'm new here. My son is 15. He was diagnosed with PANDAS in May, but the doctors think he's had it since age 4. Antibiotics helped a bit over the summer, but are no longer helping. Steroids help but only while he's on them. We've tried numerous anti-anxiety meds and none of them help. I've conferenced with Dr. Kenneth Bock and Dr. Susan Schulman. They both feel that he needs IVIG and maybe a tonsillectomy. But here's our dilemma - he cannot leave the house to get to the doctor's office. Nor can he handle having a visiting nurse come to the house. So we have no way of gettin
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