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  1. Thanks Nancy, he's 7. The behaviors popped up during the last "off" period of 5 days off. His pediatrician said the azith builds up in their system during the 5 days on and keeps them protected during the 5 day off period. Even still, at home he's not having his usual precursors for it. We know he's coming down with it because usually the night before it all starts, he has leg cramps that need massaging, a night terror, and sometimes wets his bed. The next morning he will wake up with a sore throat or just not feeling well and the tics and OCD will follow. None of that and he's doing fin
  2. My son is on a 2 month course of azithromycin - 5 days on, 5 days off. He's been on it for a little over 2 weeks. I *thought* he had been doing fairly well, but his teacher says he's misbehaving in class. His principal observed him today just jerking around, making noises, and looking like a mess. They all remember my sweet and happy kid and know this is not him and are concerned. At home, he's great - no night terrors, OCD thoughts, anxiety, tics, anything like that. But at school he's having issues. I'm going to his class tomorrow to observe him. His school is really good and
  3. My son only had one instance of strep throat before he had his tonsils out. PANDAS developed less than a year later and he has strep constantly reoccuring. I wish we'd of left them in.
  4. I'm guessing no one else has any experience with this.
  5. Mama - It is great that you have at least SOME information from the folks doing the study and hopefully you will receive the list of antibiotic recommendations soon. Take that to your pediatrician when you ask for ABX. Also, if you made an appointment with a doctor who has seen other kids with PANDAS, take the ABX recommendations from the study with you. While your child may meet all the listed criteria for the IVIG study, the researchers would be negligent if they gave IVIG to a child who really did not need it at the present time. I think that is what they are saying. Please cal
  6. For my son, the initial episode was the worst. I know he has strep when they start coming back slowly. The tics, then the anxiety/OCD.. And then I get to the doctor.
  7. So, did you actually get a hookworm infestation? I'm really curious about that.
  8. Thank you everyone who has reached out to me with my last post. I feel so much better and I am now confident that I can get my son the help he needs. We are going next week to see a doctor about 3 hours from here who will prescribe prophylactic antibiotics. At this point, I believe this is what we need. Now, my next question is, is it possible that I have PANDAS too? My son having this and figuring out how to help him has stressed me a great deal. I *know* his behaviors are PANDAS related but sometimes I absolutely cannot deal with it. Last night was the breaking point. We were doin
  9. My son's pediatrician is the one who is saying she thinks he has tourrette's and it's not PANDAS because PANDAS is a one time thing. We are having no luck with her and I've called the other pediatricians here and none are familiar with it. His ENT took his tonsils out but I know he won't be any help. Someone pointed me to this study so I contacted them.
  10. I posted to you exactly what she replied to my e-mail. There was no verbal conversation. She told me she would call me the Thursday afternoon after the panel meeting or the Friday morning. When I didn't hear from her on Friday evening, I emailed her. She replied on Sunday with what I posted.
  11. He meets all of the inclusion criteria and none of the exclusion criteria. He was disallowed solely because he does well on antibiotics. They are using kids who have been fairly recently diagnosed and those kids often have good results with antibiotics so it doesn't seem like he's so special in that regards. But if they're worried about him improving with the abx versus the ivig I can understand that. But how can they be sure they're controlling for antibiotics for everyone?
  12. Thanks dcmom, we live in South Dakota. And I understand about the study. It is a treatment study, however. Which makes it valuable to a lot of people, and their participants are people who want the treatment to help their kid and that is why they are signing up for the study. People don't just volunteer to put their healthy kid through IVIG purely for research. So it's not crazy for me to want my son to be a part of this study - I am like every other mother here. For the record, he met every one of their PUBLISHED guidelines. This stuff about the antibiotics is not published anywher
  13. So he responds well, which I assume means his neuropsychiatric symptoms abate with antibiotics, correct? Despite this, the doctor you are seeing won't prescribe longer treatment dose--to at least try for a month? (Find another doctor.) ...and in the meantime someone is telling you that you cannot get your child to be part of the PANDAS study because he did have a GOOD reaction to antibiotics??? I am sorry, I am not questioning you, it is just that I am floored that the Ps IVIG study might be so narrowly defining the subject pool that they are taking ONLY children whose parents hav
  14. Yes, it sounds crazy, doesn't it? He does wonderfully on antibiotics. But his ped won't prescribe them anymore.. and when she did the longest dose she did was 14 days.
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