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Everything posted by mamapanda

  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.
  15. Thanks, Vickie. The only ENT clinic here is the one where the other doctor practices at . . not sure how well that would go. What has been everyone's experience with the infectious disease specialists?
  16. Mama - did the doctor put your son on antibiotics before the surgery? I am just curious as some docs are now doing heavy antibiotics before surgery and / or IV antibiotics during surgery for some PANDAS kids to "sterilize" the tonsils and reduce the risk of disrupting the strep. Kim, he didn't. He barely spoke to us. I wish I hadn't of gotten his tonsils out, I had no idea how it would help his reoccuring infections (pre-strep).
  17. Kim, I don't know if the Ped ENT in town would even see us, as we included him in our bankruptcy. My son spent 10 days in the hospital to the tune of somewhere between 60-80k when all was said and done. After having a job cut and a house that wouldn't sell, we had to give up. He took my sons tonsils out, though. Didn't care for him much, my son didn't even have swollen tonsils, he just kept getting sick. The guy said it couldn't hurt to take them out. Now I'm wondering because all this strep has started since he had them out. I agree with Vickie to try ENT for longer prescriptio
  18. If you're serious about IVIG, you may want to look into having your son be part of the Yale IVIG Treatment Study currently going on.
  19. Heard back from the girl running the IVIG study at Yale on Sunday. My son did not get in, because of how well he does on antibiotics. They thought we should continue with antibiotics treatment. Thanks a lot, his pediatrician doesn't agree. After stopping the last round of antibiotics, his anxiety and tics started returning. He has night terrors every night. His doctor thinks he's manipulating me. My kid is smart, but explain to me how a 7 year old fakes night terrors? He doesn't even know he has them, much less know how to time then to an hour and 5 minutes after he falls asleep eve
  20. And its 5:30 PM their time, and no call. I guess he didn't get in
  21. No word, yet. I don't think its Lymes solely because he came down with this during the COLD winter months. It started in March when temps were still in the teens. The previous 5 months had seen temperatures up to 40 below. I wouldn't think he could of been bitten by a tic when the only times he went out, he was covered head to toe in snow gear. I have been on edge about hearing back from them since yesterday morning. Why do they torture us like this? It was decided yesterday whether or not he was accepted....
  22. Was supposed to hear back today, but didn't. sigh
  23. Thanks everyone. Waiting to hear if he got accepted into the study - the panel met at 1 to review his case. I hope we hear soon. Has anyone hear had their child on prophylactic antibiotics and had any issues with antibiotic resistance?
  24. momaine, we lived in Northern Maine before moving here to the midwest. He's never had a tick bite that I've noticed, though. And no, they haven't tested for lymes.
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