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Everything posted by JPdad

  1. Long story short, my insurance changed and I wont be able to visit my PANDAS doc any more who prescribes my son his Azith. Local pediatrician feels uncomfortable about putting a kid on it long term, but would consider it of I could show her some studies on it. Does anyone have a resource for me here?
  2. What is everyone's opinions on the HPV vaccine? It seems like a good thing to vaccinate for as our kids hit the teenage years, but I worry about introducing anything into a PANDAS kids immune system.
  3. If some doc wants to tell me PANDAS isn't real and that my kid has Tourettes, fine. Just as long as he can explain to me why antibiotics cure my kid's Tourettes symptoms but wouldn't help a kid at all with actual Tourette's.
  4. For us it took the T&A and daily antibiotics before we got to 100%. We did 10 days of Antibiotics before, IV during, and 10 days after the surgery and he was 100%. Then once his script ran out the tics returned, so he went on Augmentin daily. Since that point he has been 100% for almost 8 full months now. Fingers crossed this cold and flu season passes and he stays where he is now.
  5. Very good news! Do you plan to keep up with proph. abx afterwards? We've seen complete wonders post T&A with daily ABX.
  6. I don't want to say anything negative about the guy because he has helped my son very much, but his office is easily the most unprofessional doctors office I have ever encountered or heard of. Beyond not taking insurance, they don't even have a personalized answering machine message. The receptionist (Silky I think she calls herself) is not helpful or professional at all to put it mildly. It's just very unprofessional and dissappointing to leave for weeks on end and not have somebody there to cover your practice and refill prescriptions for sick kids.
  7. I've been trying to get a Rx refilled for 3 days. Anytime I or my pharmacy call the office it rings to voicemail and there is no message on the voicemail.
  8. It could be strep hiding deep in the tonsils or inner ear. Our story is very similar to yours. After the first PANDAS episode caused by strep, we were helped greatly by augmentin. Every time we took him off Augmentin he'd be fine for 3-4 weeks, then would start a new flare and typically was diagnosed with an ear infection. A few days on Augmentin and he was better. Once the 10 day script ran out you could set your watch to it, and the whole flare process would start over in about 3 weeks. After over a year of this process we finally convinced the docs to removed tonsils & adenoids, put in ear tubes, and prescribe daily Augmentin. Since that took place (cross fingers) he has been 100% healthy and PANDAS flare free for about 7 months now.
  9. My DS has only ever had strep twice that we know of. The first time was before PANDAS, and he was 3. He had an awful sore throat, high fever, and was miserable for 3 days but had no PANDAS symptoms. The second time he got strep he had no sore throat, fever, or any other symptoms. Instead he developed tics, OCD, and hyperactivity. That was the beginning of his PANS journey. I wonder if it is different strains of strep that might be responsible for the PANDAS reaction.
  10. Yogurts and cheeses are known to contain strains of strep cultures. We avoid all yogurt and cold cheese just to be safe.
  11. I think for our kids, the tonsils harbor a bunch of bad bacteria that causes them issues. Many have seen positive results from removing the tonsils coupled with long term antibiotics. I say, if in doubt, take 'em out.
  12. We had no luck with zithromax 3x a week. I guess the theory is that it has a longer half life (60 hours or something) and a single does is supposed to keep you protected for a few days. For whatever reason DS kept getting ear infections and exacerbations. Once we went to daily augmentin he was able to stay infection free.
  13. It sounded like all of the kids got better, even the ones that Dr. T didn't treat which is why the PANS diagnosis wasn't 100%. If you watched the show you can draw your own conclusions. I think the older woman was either faking for attention or simply had mental problems. She basically admitted as much. The two girls Dr. T treated for strep and Lyme were most certainly PANS kids. I kinda wonder if some of the other kids were true convergence disorder kids? Maybe the couple of girls actually had exacerbations from an infection, and then a few other kids saw them ticking and stress of their lives made them start ticking too? Regardless, it surely is one weird/fascinating case. Dr. T. is a good man for going up their on his own dime to try and help those kids.
  14. Our doc never did a culture. We did 10 days of Augmentin before and after and IV antibiotics during the surgery. So far so good for us. DS has been symptom free for 3 months following the T&A and we have him on daily proph. augmentin now. This is the longest he has been symptom free since his initial episode about 16 months ago.
  15. I just fillped through and stumbled across this special. Has anyone seen it yet? So far it covers conversion disorder and possible infection. I wonder if Dr T or anyone else will be on it?
  16. So does Augmentin work for preventing the Lyme? He is on Proph. Augmentin now, so could we run a full dose for a few weeks? Will that also fight the other co-infections we need to worry about?
  17. Thanks for the advice. We saved the tick. Should it get tested? What do I do when my pediatrician doesnt want to treat with antibiotics rigth away? Is there some info I should take with me? Going in the morning.
  18. Our DS6 with PANS, no lyme, came home from baseball practice today and had a tick stuck in his arm. We followed protocol and tried the cottonball with soap trick which didn't work so ended up getting it out with tweezers. I'm pretty confident that we got the whole tick out because it was crawling around afterwards. We washed the areas and applied antibiotic ointment. Our question is now, what to do the prevent lyme. We live in PA, and this was a deer tick. Lyme is pretty common around here. Should we get him on an antibiotic? He takes a proph. dose of Augmentin now. Should we see a doctor? Your advice is appreciated.
  19. PANS and Lyme are completely separate things. Most have one without having the other, therefore they should have separate forums. It's like combining a diabetes and cancer forum IMO. Just my 2 cents.
  20. First exacerbation was about 6 weeks to recovery after strep. A bunch of ear infections caused flares that were cleared within 10 days with ABX. The worst we've experienced was a nearly 3 month long episode this fall brought on by a coxsackie viral infection.
  21. I can only speak from my personal experience, but the difference in my son has been night and day since his T&A and proph. antibiotics started. Then again, his primary trigger was recurring ear infections that wouldn't stop coming back month after month.
  22. Obviously people dealing with an autoimmune disease like PANDAS would be most vulnerable during cold and flu season, with January being the height of that. I'm sure birth month has nothing to do with it. More people are born in July/August/September than any other months. January is only the 7th most common birth month.
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