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faith

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Everything posted by faith

  1. hi, our last trial of tryptophan didn't go over well and seemed to cause an increase after just one dose. I didn't continue after that.
  2. phasmid do you mean no c.diff from 'before' this recent azith and diarea? any way it could be coming back wit this abx?
  3. I just felt like saying this is an extremely well written article, not just for the sake of PANDAS, but it resonated responsible and truthful to me, .....very nice Rebecca. (altho not sure, but they may have gotten those dates wrong, no biggie, but I think it 1999 that swedo did the study rather than 1989...)
  4. And by the way, I totally disagree that those who are supposedly cured are not on these boards or have moved on. (maybe some, but not all)...If they have moved on, and don't frequent these boards because their kids are well, I'm sorry, I don't buy it, because first of all, if they frequented this board for help and support and got it, I am sure they'd lurk around once in a while to give it back, especially knowing how desperate they were at one point. most of us (and most people these days) have their laptops glued to their knees on some days, so clicking here, there, and everywhere is a pre
  5. kelly, I won't give a long response, but I just want to give one thought that I have....if you're boys are mild enough, it is my feeling (and only my feeling) that in a few short years, things will probably naturally settle down for them anyway. if they are not getting any kind of severe or even moderate exacerbations from strep right now, or even may not be getting strep as much, something tells me it probably will not likely happen in the future. this is not a blanket, true definite statemtent, its just my common sense talking. we know that many kids with tics (and I think that is what yo
  6. hi coco, but what I don't get is that being that your doctor is an immunologist, and he did the work up (I assume) didn't he know that low iga is a problem? that is how you went on to do monthly ivig, correct? based on the immunodeficiency work up you had there? Is it alright for me to say to parents, please be aware of all these things, because just because somone does ivig, doesn't mean they are well versed in PANDAS or how exactly to treat. I have heard of the low iga before, a couple of folks here have talked about it for their child, I think htere is a dad here who did, cant' recall
  7. Yes, I've read that you can get those empty veg capsules and put a few drops in the capsule and swallow it that way.
  8. I have a thought, hope you don't mind, but for those here, ....how do we know that the 'flairing' isn't a reaction to the treatment and actually is making things worse for a time....and then when that particular flair backs down, it is kind of an illusion that things are getting better, but in reality, it is just a releif, so we think things are better. sorry, sf, I know you don't like me asking this, I know some have had symptom releif in the long run, but it is really a rocky road,....for me, I'd rather take the evil I know for now, than to add more to the mix. maybe I would be happy once
  9. The unexplained rage is our biggest- he has more OCD that I realized...but the rages- I can see in his eyes when it is over how much he hates it too.... what do the two of you make of my son's anti-lysoganglioside which is not at 320, but 1280......(cam was 179)..we have tics as main presentation and some ocd, but I'd rate it secondary. don't think he has what I would call rages, but is very headstrong and likes to have his way, so just more relentless I would say, and very irritable in the mornings especially. (just to not, fuelforall also has 1280 for anti lyso) thanks Fait
  10. I don't feel this is a 'symptom' of pandas or anything else. my son is 11 and is the same way. I think he is just used to hving company, because we let him stay with us for so many years. I should hve nipped it a long time ago, but I didn't mind when he was little, I liked it.... he likes me to lay with hm until he falls asleep and then if he wakes up during the night or wee hours, he shows up.....he uses the excuse that he loves me and likes company.. don't know if he's afraid, or just used to it. p.s. I slept in between my parents til I was about 10 as well. at 14 tho, will she st
  11. Carolyn, hi what things have you treated with this system?
  12. I read about that study with great interest. They found a family where the dad and all eight of his kids (all with TS) had a small genetic defect which caused them not to have enough histamine in their body. The researchers beleive that low histamine levels may be a cause of TS. Among other things, histamine is very important for healthy brain function and neurotransmission. I was in touch with one of the authors of the article and he said that, as soon as they can, they will begin testing Histamine 3 receptor antagonists on adults with TS. These drugs are in late stage development and
  13. two questions here, Stephanie, what did you mean by DPHDHA? what is that? where is that on the test? and where did you find of it being linked to clostridia. i'm interested in the clostridia. could you elaborate or give me more info? bqbarnes, aside from the myco p being elevated, what else is standing out for you that you think makes your son so sick? i don't think his levels are grossly out of range. Dr. K. hasn't reviewed this yet, correct? thanks Faith
  14. loved the pics....hes darling! great to see things are going so well Carolyn....
  15. bmom, why did he start Biaxin? what was he on before? he's had ivig before tho, correct? how were his tics prior to going on the Biaxin?
  16. smartyj, how did you find about the toxoplasmosis? what kind of testing is that? do you have a cat?
  17. thanks for that smartyj, now that makes me think more. You felt the keflex helped, but he was also on nystatin at the time? ... whith the azith, any diarea? Santi, you didn't mention any gut or bowel issues, was there any other reaction while on azith such as diarea? or anything that would be considered a gut/bowel issue prior to any abx? Perhaps we are not giving enough reality to the fact that abx can cause some gut problems, that will in turn cause issues (yeast) that will bring symptoms of tics out. this is a hard one to figure out, but I'm slowly working on it. I havn't rea
  18. Santi, did you feel like you had the same response before, (as you're saying starting 'again')? I didn't like azith, I felt on after a about 5 or 6 days that my son's vocal was off the wall loud and very frequent. I didn't wait it out, I took him off, and he calmed down the next day. now I don't mean he stopped the vocal, but the usual went to crazy and then back to regular when I stopped the azith. don't know what that was about, but it was really obvious. I'm working on a theory,...could I ask, does or did your son every have any stomach/gastro/bowel issues..anything? could ye
  19. I would be inclined to think this is normal, especially if you say he has some belly protruding? of course he is going to be concious of it at that age. my son is skinny as a rail, and I have had him not want to wear a puffy coat at 8 or 9 because he said it makes him look fat (basically to them I guess that means 'uncool'?)... that said, the part about the two or three shirts sounds more sensory of some type, not sure what that's about. but it sounds like he may be trying to just hide the way he looks in some type clothing? again, my skinny rail wears very large t-shirts to mask his
  20. If you are talking about the kind of throat clearing where somone sounds like they are attempting to truly 'clear' the throat, as in mucous, ('ahem' type sound),....may be a tics, yes....but two things I would suggest to look into is a trial of no dairy, as this does produce mucious and if mucous build up is the problem, it may help alleviate it. If it is a thoat clear with a vocal 'sound', where you actually hear the child's voice, then I'd say that it was a vocal tic, from experience. It doesn't mean it will stay forever, it could come and go. if the child has no other symptoms of any
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