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Everything posted by sebrown1126

  1. How do I talk to doctors from NIH? My local pediatrician is afraid to treat because he feels it is outside his speciality, But if he had an AOK from a NIH doc, that would help a lot.
  2. My son had IVIG in March of 2011, and after a long recovery from the IVIG, has had more than two great years. Unfortunately, this winter has taken its toll, and PANDAS symptoms are back (mostly anxiety, obsessive fears, and some defiance). I am really struggling because the physician who was treating him is no longer practicing medicine, and since I thought this was behind us, don't have a physician who understands PANDAS who is willing to write a script for antibiotics. His throat doesn't hurt and he likely won't test positive for strep, so I can't get a script from urgent care. Until
  3. My son had a successful IVIG in May 2011 that got rid of 99 percent of his symptoms. He's on prophylatic Zithro and Olive Leaf Extract for good measure. Over the last week, he has had urinary frequency and urgency, and I fear that some germy kid at school has strep. I thought we were protected from this with the zithro! The exacerbation is MUCH less severe (thank you IVIG), but I can't let all the good progress slip out of my fingers. Also wondering why he is having an exacerbation when he's got all those good antibodies!? Any thoughts as to what to do? Thanks!
  4. For PANDAS, the most helpful supplements we used were Inositol with IP6 and Olive Leaf Extract. They didn't fix the issue, but definitely did enough so that we felt it was worth it.
  5. Rage and impulsivity were our most prevalent symptoms during exacerbations/infections. Very tough to deal with, because no amount of "reasoning" would work. We also had many episodes of what they call "exorcist syndrome."
  6. I mentioned earlier that my son was neurotypical before the T and A, and had autism and PANDAS afterward. We aren't sure if it was something related to "bacteria being released" when the tonsils were removed, or the anesthesia. I learn towards both, and think the autism issues were related to the anesthesia, and the PANDAS to the tonsils. I have talked to many physicians since the surgery, and read a TON, and my suggestion is to ask the anesthesiologist for "balanced anesthesia" (his term) but basically, no nitrous oxide. It depletes the glutathione and stops up the detoxification process
  7. Is the Michigan PANDAS group also online? We are in Michigan and my son, after 3.5 years is finally in remission from PANDAS. Thanks.
  8. Tonsil and adenoid removal is what STARTED our whole issue with PANDAS and autism. Our son was neurotypical before his surgery to remove tonsils/adenoids. It has taken 3.5 years to get him back.
  9. We had two back-to-back days HD IVIG for our son just before Easter of this year. We had an extremely rough time after the IVIG, which lessened over the span of three months. Even while having the rough time post IVIG (sometimes during that time I wondered if IVIG had done anything, alternating with believing IVIG was the greatest substance ever), we did feel that we were trending positively toward health. Now, about five months post IVIG, our son is doing so wonderfully that people outside our family call him a "changed boy." And generally, because of the PANDAS fear, our son didn't "act
  10. Those first weeks after IVIG were SO rough for us. There were times when I wondered what we had done. To get through it (and it has been SO worth it!!) we used a lot of Benadryl (around the clock, every six hours). We used charcoal but that didn't seem to help as much as the Benadryl. We did Motrin in the beginning but didn't keep up with that. We kept life very simple and didn't expect much, which is so hard because everyone is hoping that IVIG will have a wonderful effect. As hard as it is, really three months out is the indicator of success for most. We actually are closing i
  11. Unfortunately, T&A is what set off PANDAS in our son. If we had known, I'd probably have worked with the ENT more closely so that he more carefully removed the tonsils. I wish we wouldn't have done the T&A but I think the problem also had a lot to do with the anesthesia as well. My son had an autism diagnosis for two years after the surgery and then we just had the PANDAS label. He had IVIG four months ago and I call him "in remission."
  12. We had a very rocky time post IVIG, but are fortunately on the other side now. Several times after IVIG, our son would regress. Now, I surmise that it was the antibodies finding more "bad ones" hiding in his body, and the bad behavior was part of the die-off process. We gave around the clock benadryl post IVIG when he had those bad periods, as well as activated charcoal. We also made sure the kid was pooping regularly to get that bad stuff OUT! Have you continued antibiotics post IVIG? Perhaps your child got exposed to strep again? We also give our son olive leaf extract, which seems to he
  13. My son had IVIG four months ago and it was very successful. He still has some slightly "off" days, but for the most part, IVIG was a miracle for us. We are continuing once weekly zithro. All of the sudden, my son gets cramps after taking it, has a really very messy BM (he makes me come look), and then moves on. Anyone have a similar reaction? Is this strep die off? Also considering it could be yeast. Thanks!
  14. I had originally posted about Dr. C. I would email Cathy because I don't think you have to have a consult appointment with him before you could get the PET-CT. Plus, he is VERY research oriented, and so more brains to scan means that he gets to continue his research and his funding. So it behooves him to make sure you get the PET. We did not participate in the research study but he did offer it to us. My son's issues started because of anesthesia so it was too big a risk for us to take. I do understand "the greater good" and that his research would potentially help others, but I just could
  15. We had IVIG three months ago, with such good results! Our son is still occasionally going through some bumpy periods but they are short lived. I think his body is searching out the last of those nasty antibodies. So now, until he's 21, we've got to keep him protected from strep. Insurance will only cover four 500 mg Zitho pills a month. My doctor says that with the half life of zithro, he's unprotected one day out of the week. Thoughts? Any of you now doing antibiotic therapy post IVIG doing a similar regimen? Does it keep them protected? Or should we go to daily penicillin? Tha
  16. If you're in MI, no reason to wait for approval for a PET. Contact Children's Hospital. Dr. C at Children's does research on this topic and Children's will most likely do a serotonin PET-CT at no charge.
  17. My son had IVIG at age 8, three years after getting PANDAS. I wish we would have done it sooner. We had an extremely rocky time post IVIG. He threw up every 15 minutes for 24 hours. We gave Benadryl and Motrin around the clock, when he could keep it down. Limited steroids, but we did some. He had a killer headache. The rocky period lasted a few weeks, then tapered a bit so we'd get some peace, and then we'd get another wave of bad behavior. Turns out, it was just the antibodies dying off. Evidently, the body doesn't kill them off all at once, and so, like others, we had a bad period
  18. If you child has PANDAS, then they have to be on antibiotics. If your physician won't give them to you, it is important to find another physician. With every exposure to strep, they get worse. We got to the point that our son was just in the same room as someone with a sinus infection, and his symptoms would get bad again. We tried the antibiotic route for probably a year or so. We ultimately went with IVIG and now, three months post treatment, my son is doing unbelievably well. IVIG was our miracle. The throat culture is useless. It's the antibodies that are the important indicator.
  19. We had a similar issue. Perhaps it is your younger child getting sick first (but symptoms don't show up till later) and it affects your PANDAS child. When my son's PANDAS was very bad, he'd have flare-ups just being in the same classroom as a sick kid. And because the sore throat doesn't show up until a few days after the kid is infectious, it was nearly impossible to keep him from being exposed. Antibiotics helped at that point, but didn't keep the flare-ups under control. Only IVIG, a wonder drug in our family, solved the issue. We had some rough times after the IVIG but now, three months la
  20. We did feel OLE helped. It didn't solve our issues, but it did help with keeping his gut under control. Actually, the supplement we found worked best was inositol/IP6. Ultimately, we needed IVIG to solve our issues. We are three months out and the peace in our house is so wonderful!
  21. Our son had IVIG five weeks ago. After a rough week days initially, we've had a really great month. He was exposed to strep about a week ago, and now is regressing. It's hard to know if the regression is part of the post IVIG roller coaster others have experienced, or a problem related to the strep exposure. We are doing ABX and have stepped it up a bit. Here are my questions: Could we have "ruined" the IVIG benefits by being exposed to strep? What do we do to get past these post IVIG regressions? It would be easier to cope if we understood why. It just doesn't make sense. Why a
  22. We weren't accepted for the trial. They wanted new diagnoses only. We ended up getting insurance to pay for IVIG thankfully.
  23. We are two weeks post IVIG. My son has been a big rollercoaster. Sometimes, we get glimpses of what his "new normal" will be...and he's calm, happy, no rage, no urinary urgency, no "voices in his head." It's absolutely wonderful and I want to cry tears of happiness every time I see him like that. Sometimes, out of the blue, we'll get a horrible day where he's screaming his head off and hitting/punching for no reason...and wonder if the IVIG was a flop. I don't understand it. What is the biochemical reason as to why kids hit a rollercoaster after IVIG? Is it a series of detoxes? Is i
  24. I wish there was one right path, one right answer with this disease, but there's not. What actually set off PANDAS for us was a tonsillectomy. If I could go back, I'd never have done the tonsillectomy, but I can't. We did about a year of abx and other supplements. We had some good results from bacteria-fighting supplements for a little while, and some positive results from Insitol (another supplement). We are currently about 10 days post IVIG. What's hard is that recovery seems to be a roller coaster. He'll have an answer day followed by a horrible, rage-filled day. We are doing lots
  25. I am very interested in this topic too. We are about 10 days post IVIG, and we've been doing 250mg of amoxicilin daily (he weighs 80 pounds). We have a month's worth, but the physician recommends this regimen for four to six months, then a once weekly zithro (500 mg) until he's 21. This daily amox is causing a major yeast flare up. It is really masking the IVIG benefits and I'd really rather switch back to the weekly zithro. How important are these antibiotics? Thanks!
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