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bigmighty last won the day on October 10

bigmighty had the most liked content!

About bigmighty

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  1. PANDAS teen with severe OCD

    I am so sorry. DS's long-lasting remission came from a 3-week steroid taper coupled with augmentin 875 2x daily. At first, he got a bit worse, then remission came two months after the taper ended. He remains on antibiotics and turmeric. Would he be willing to try steroids? Clearly needs to reduce brain inflammation. Again, terribly sorry.
  2. 7 years of PANDAS

    I am so sorry. It sounds like you've already tried pretty much everything, but I have to ask - do anti-inflammatories help at all? My son was helped tremendously by steroid taper. Prior to that, he did much better on ibuprofen 3x daily. Presently, he takes turmeric capsules 2x daily and that seems to keep most of the symptoms at bay. I realize it's not a real solution to reduce inflammation rather than address the inciting problem. But I suspect you'd take anything you can get at this point. If you can get her to take ibuprofen either capsule liquid 3x daily for a few days or take the turmeric and see if she feels any better, maybe you all could get a small measure of relief. Again, I am just so incredibly sorry.

    DS is in remission from the PANDAS, but still has a CVID along with IGA and IGM deficiencies. Those seem to be gradually worsening.
  4. Bactrim and MTHFR mutation

    My son also is compound heterozygous for MTHFR (A1298C and C677T). He has been on Bactrim for 17 months with no problems.
  5. Mycoplasma Pneumonia - Please help!

    My son got mycoplasmic pneumonia after having his tonsils removed. Augmentin didn't help, so he was switched to bactrim. It took a good five months on bactrim to kick it entirely.
  6. I wish I had known how helpful anti-inflammatories are while searching for a more permanent solution. Turmeric capsules 2x daily reduce inflammation enough to help DS cope when he has an exacerbation. Ibuprofen helps, too, but not as much. I wish I had known that a steroid taper can help verify that systemic inflammation is the cause of the symptoms (behaviors diminish or disappear entirely while on a high enough dose of prednisone then re-emerge as steroids are reduced.
  7. Frazzled

    Carolyn Walsh in Leesburg is an internist who is very knowledgeable about lyme. No idea if she is taking new patients.
  8. Just wondering if anyone else on this board is in Pittsburgh. DS19 plans to keep his internist in northern VA so not super worried about finding any specific doctors here for him. Just wanted to know if there are any others in this part of PA.
  9. Derek Johnson http://wheezefree.com/about_dkj.shtml
  10. When my son was in the midst of his most severe exacerbation he did steriod taper for 3 weeks starting at 35 mg. It was about a month after the steroid taper ended (while still on Augmentin) that he began to improve. When he finally did improve, the improvement was dramatic and led to a very long remission of symptoms.
  11. Anyone else with kids who are generally immune deficit? DS18 has been on prophylactic bactrim during 1st year in college (after having tonsils out last spring). We had anticipated weaning him down and then possibly off by next fall. But now his labs are showing IGA and IGM deficiencies. Still has a CVID, as well, but not low enough to qualify for IVIG. I had thought DS would eventually be entirely off of antibiotics, by the end of his time at university, at the very latest. Now it is looking like he may be on them indefinitely. Are others in this boat? If so, how are you coming to terms with the possibility of daily antibiotics for life?
  12. Any advice for inflammation?

    DS takes turmeric 2x daily and it helps greatly with inflammation - http://amzn.to/2eh0G3Q
  13. Post ivig flare

    Do symptoms decrease if you take ibuprofen or turmeric? Did Dr B Try prednisone and/or is that something you'd consider if you haven't already done it?
  14. Tonsillectomy & PANDAS

    DS had been in remission for quite some time when Dr K highly recommended that he have his tonsils out prior to starting college. He had them removed this past March, was on antibiotics and steroids for months afterwards. Strep and Mycoplasma were found on the tonsils. Anyway, he ended up getting mycoplasmic pneumonia and was sick for months including significant flair of most of his PANDAS symptoms. Ended up on bactrim since this past May. He is now away at college and can only keep his symptoms under control with the bactrim. Every time he either stops or switches to augmentin, his ocd returns in full along with inability to eat or make eye contact. Our feelings are mixed. On the one hand, there was clearly stuff trapped in his tonsils that was not good and now it's working its way out of his system. On the other hand, our goal in having his tonsils removed was to get him in a better position before beginning college and, at least for the short- and mid-range term, we inadvertently made things worse. Dr K thinks the only thing we can do is have IVIG, but we are hesitant.
  15. Allergic reaction to Alinia?

    About six months ago, I was put on Alinia for a week, followed by Nystatin for a week. I recall the doc saying that I should not take both at the same time. So sorry for his reaction. I hope you figure it out.