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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 use it almost like aspirin for a headache, to deal with it just when it happened.
  6. 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 used to treat immune deficiency (typically around 0.5 g/kg), it's hard to hit these levels, so we do 1 g/kg. SCIg can sometimes be better for keeping Ig levels consistent over time to better fight infection, but he feels that the best solution to that problem is to increase the frequency of IVIG, instead of moving to SCIg, if PANDAS kids are still getting/keeping infections. So when my kids have been actively fighting infections we've done it every 3 weeks. Lately we've been able to back off to monthly. He likes to keep them on penicillin prophylaxis because it's got a relatively narrow spectrum, so that we can save the bigger guns (Augmentin) for if/when we need them, but if they actually get sick we switch temporarily to Augmentin, and we switch temporarily to clindamycin for dental issues (tooth loss/dental work). I hope that things turn up for you quickly!
  7. 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 all other symptoms with IVIG treatment, but still has occasional short and very mild blips of eye tics and crabbiness with tooth loss or infection. Both are 8 months into treatment now.
  8. 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 it's not a good day for math, he can do some lessons in languages, science, history, spelling, or whatnot. If your son likes academics (even some) but does not want the pressure of keeping up in a brick-and-mortar classroom, something like that might be a good idea. Re exercise, how about running? That's great exercise for burning off steam with little germ exposure, and will help keep him in great shape for just about any sport he may want to get back into. It's also a sport where it's easy to measure progress so it helps with a sense of accomplishment. This may sound cheesy, but I also get a lot of "mileage" out of running with an athletic pup - it makes the dog so happy, it's hard not to feel good about the whole thing. Re. prednisone, in my experience the first 2-3 days of it can be hellish, but around day 3 I get a breakthrough. I've only done a three courses of it, ever, but you may want to give it a couple of days before you give up on it.
  9. 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 mind was constantly, constantly spinning trying to find a way out of going through it, but being born is an inevitable part of the progression of a person's development, and no matter what I did or how awful it could end up being, this baby had to come out of me...so I just hung in there, prayed a lot, went to another place in my mind, and eventually it was over, and luckily everything turned out fine in the end. I think of my own mid-teens the same way. My childhood was kind of a lumpy, awkward, and uncomfortable process PANDAS-wise, but not without its great pleasures, like pregnancy. Then my adolescence came and it was the worst kind of unbearable PANDAS "labor" - full of relentless pain and blood and sweat and tears and a constant desire for it to be over - but it was of course an inevitable part of the progression of my development, the "birth" of my adult self, no way around it except through it. But then, when the "labor" was over, I became an adult, and even the discomforts of "pregnancy" eventually went away (and I was left with just periodic mild "cramps"...to stretch the analogy too far!) This is probably not of any help in getting through the day, and may not even be an analogy that you or anyone else can relate to, but whenever I see these stories of struggling teenagers, I still think "that's labor" in PANDAS, the painful process of birthing an ultimately healthier adult. I never feel that these kids are actually getting progressively sicker - I just think that they're going through a rough transition to a better place, and I feel confident that with time, that stage will pass and things will be easier than they have ever been before.
  10. 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.
  11. 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 call that 100% recovered/cured, or whatever. Also,right now he going through another round of losing baby teeth, and is having a bit of a hard time. This happened when he first lost baby teeth before he started treatment, and it was MUCH worse then. This little episode he's having now amounts to a couple of tics per day and a couple of ugly 15 second outbursts per day, no OCD. Not bad, especially considering that he also just finished a week of hard, late-night Nutcracker performances on top of school, but not 100% either. I just can't wait for this pair of teeth to fall out completly and heal up....my expectations have gone up, I guess, and at this point I get exasperated seeing any PANDAS at all.
  12. 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 psychiatrists I worked with at Columbia - that the anxiey folks with autoimmune issues would eventually start cycling on SSRIs. Just something to keep an eye out for. Incidentally, Wellbutrin was effective and did not appear to lead to such cycling.
  13. 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 infections and immune deficiencies. They get IVIG every 21-28 days - the schedule is really 21 days and that's ideal, but sometimes for scheduling reasons we have to stretch it out a few extra days. Their immunologist does take blood for monitoring periodically, but I don't actually know the numbers or exactly what target he's after. He seems to be going more by their clinical state. If they're doing well, we continue as is; if something comes up, we tinker. Ds4 is expected to need IVIG indefinitely due to CVID. I still hope that some day he will grow out of it since he is so young, but with his numbers, I guess the stats aren't promising. We were hoping that ds7 would be done with the treatments by now since his deficiency is not as bad as his brother's, but we tried to extend the interval between his treatments last month and he got a sinus infection before the 28-day mark that wouldn't go away, so we had to start up again so that he could clear it. Based on that, I think still needs it, too.
  14. 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.
  15. I also wonder if this may be different for kids with vs. without immune deficiencies. When we got his test results early this year, we noted that my littlest guy basically doesn't make antibodies to much (he has CVID), so I wouldn't be surprised if he didn't make antibodies to IVIG either. My older is also immune deficient. We're still doing IVIG every 3-4 weeks, and still are 99.9% symptom-free for PANDAS. Actually 100% almost all days.
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