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momto2pandas

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  1. I haven't been on here in ages - probably a year! - but was looking through some posts and figured I would get on this one to reply. My ds7 had issues with loose teeth, particularly when they would hang out in there for a while. We started bribing him to just yank them out, and that seemed to help. With respect to antibiotics, we consulted some dentists and our doctors and were told that clindamycin was best for tooth-related bacterial stuff. So each time he he's gotten a loose tooth since we figured that out, we've switched to clindamycin for a couple of weeks. Worked great for us.
  2. Hi momto2pandas - can you tell me where in Canada you can get ivig for PANDA? I am seeking it in the States because I cannot find anyone here that will do it. They will do IVIG for ITP and for Kawasaki, but not PANDA. Any help or direction is so much appreciated.

  3. Both of my kids have had monthly IVIG covered by Aetna, but both have immune deficiencies, one CVID and one IgG subclass 3 - and lots of documented chronic & recurrent infections. I don't think that PANDAS has even been mentioned in their applications. We are switching to United this month and I'm hoping they continue to be covered. United says in its policy on IVIG that it covers use for PANDAS, so I'm puzzled as to why it would ever be denied. Do they only approve it for severe cases? I applaud what you're doing!
  4. It was one of the 14 different courses of antibiotics we tried to clear active strep last year before figuring out that our kids were immune deficient. They did seem to improve while they were on it, but like with all the other drugs at the time, they got sick again the minute they finished the courses. I guess in that way it was no better and no worse than the other antibiotics they tried.
  5. One other thing. I'm not getting a 100% clear picture, but it sounds like your dd's episodes are sudden and cataclysmic and resolve pretty rapidly too, if she was really "coming back" by the time you got to the ER. Could she be having some sort of seizure activity? I had episodes like that when I was around 20, and it turned out that my thyroid was super duper low at that time - so low that I needed to be titrated up to a full replacement dose to get it back to the normal range. Maybe they'll check that in the ER. In the meantime, Depakote put a speedy end to the episodes. I was able to us
  6. With the fish oil, my experience has been that it's critically important that you get the right ratios of EPA/DHA, at least 7:1. DHA messes my kids up (I tried it), but the high EPA has been nothing short of a miracle over the course of my own personal history with PANDAS and I give it to my kids every day. Re. IVIG, my kids are immune deficient so get them every 3-4 weeks. We've probably had a dozen at this point, and I do have to say that some are better than others. Probably 80% have been good, but we have had a couple that have seemed to leave them moodier for 2-3 days and not to fi
  7. So sorry your DD, and you, are having a rough day. Sounds like you did exactly what you needed to do, though I'm sure it was hard. I don't know where you live, but our pediatric immunologist in LA has been doing a very good job of managing my boys' immune deficiencies and PANDAS. We've discussed SCIg with him a few times, because we like the idea of the convenience, but he's kind of against it for kids with immune deficiencies and PANDAS because he says that with SC, you can't get the peak levels that you need to "turn off" the autoimmune response. Even with the ordinary doses of IVIG
  8. Two brothers, both immune deficient and PANDAS. One was diagnosed with both immune deficiency and PANDAS, and treated with monthly IVIG and abx, starting at age 3. The other was diagnosed with PANDAS at age 4.5 and treated with courses of abx (not prophylactic) but was not diagnosed with immune deficiency until age 6, at which time he also started treatment with monthly IVIG and prophylactic abx. Son treated since age 3 has had complete remission of PANDAS symptoms with no blips that I can recall. Other son had complete remission of OCD with initial antibiotic treatment, then resolution of
  9. The homeschooling is a great idea. For a different reason (not PANDAS), our school district supplied us, at no cost, with a self-paced, on-line curriculum with a bunch of different courses for my second grader. It's a great program. What I like about it, beyond the fact that my son loves it (it includes lots of "fun" learning stuff), is that the program does 95% of the teaching (it would probably be more for an older child) and keeps track of what he's mastered and what he needs more work on, so it takes most of the burden off of me. And there are so many interesting courses on it that if
  10. Joan, I don't know if this will help, but for me, the mid-teens were the absolute worst. I don't know how either I or my parents made it through, but it did end, even without the kind of recognition and treatment that we have these days. Looking back, I liken my childhood and adolescence to pregnancy and then childbirth, respectively. I remember right before my first son was born, I had all of these feelings about just wanting to NOT give birth. Not that I didn't want my son, just that I didn't want to go through the birth process (we had reason to believe that he might not survive it). My
  11. I am so happy for him, and for you! Over the coming years, I think he can look forward to the kiddie coaster turning into a jog over rolling hills. Gotta work a little harder up the hills, but all the while knowing that you'll coast down again before long.
  12. I don't think I can fill out this poll properly since my kids have had both monthly IVIG and antibiotics and I have 2 with slightly different results (so far). Both started IVIG in April. Ds4, who was 3 when he started IVIG, has been 100% recovered of PANDAS, as far as I can tell...for now. He has had blips of poor energy when he's gotten an infection (guess that's normal) but I don't recall having seen any OCD or tics since the first month after he started IVIG. Ds7 has also done very well - 100% almost all days, though he is more prone to "blips" when he gets infections, so I wouldn't ca
  13. So glad to hear that you're seeing good things! I hope that those good things continue to grow. Re. SSRIs, in the past when I had periods of depression associated with PANDAS, I found very low doses of Zoloft or Celexa to be very helpful. NOT fluoxetine/prozac - that was far too "activating". I don't know if this would be true for your son, but for me, the trick was not only to use very low doses, but to go off of it once I got my bearings again, usually a few days to max a few weeks, because otherwise I would start to mood cycle. This was a known phenomenon among some of the psychiat
  14. My kids are 4.5 and 7. The 7 year old had PANDAS for at least a couple of years, mildly and intermittently, before the chronic infection that led us to find out he was deficient and needed IVIG. We had noticed PANDAS in my 4 year old, again mildly, only a few months before he got IVIG, and around the time we started to test for immune deficiency...but he had been sick with recurrent/chronic sinus stuff ever since he was a baby. Anyway, neither had had a very long or very deep history with PANDAS before we started IVIG, and we didn't start IVIG for PANDAS, but rather because they had chronic
  15. We are doing about 0.9 g/kg. So that would be high for immune deficiency (which they have) and low for autoimmune disease (which they also have). I would consider it "middle" dose all in all. I couldn't be more thrilled with the results.
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