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Everything posted by faith

  1. http://content.nejm.org/cgi/content/abstract/362/20/1901
  2. http://content.nejm.org/cgi/content/abstract/362/20/1901
  3. Dear Carolyn and baby Aiden, just thinking of you guys and wanted to wish Aiden a very happy, healthy and blessed first birthday. Don't know if you're around much, but hope you are doing well and hope you can post some pics and an update soon!...... love and hugs, Faith
  4. Really good to hear that Kara.....we've had good success with ERP for some writing/retracing issues, and I was kind of amazed how the kids can really tackle some of this if they want to.......I know it might not be for everyone, but I do think its worth a try.
  5. I think the first poster phasmid, is asking if IVIG is worth it..... To be fair, those that answered in the affirmative, are ones with more toward the severe or at least with kids who have many issues. if your child is 'non-functionable', then maybe its a no-brainer. but for those of us who teeter on the moderate to mild, well, ..... just don't know. Just my two cents, but I am quite okay with those with more severe cases going forward with this, I would do the same. I think the problem comes in when the child is not as severe, a more moderate or even mild case. My own feelin
  6. Stephanie, did you feel the tics were helped by the spiro as well? or they were still kind of there? if they were gone withthe sprio, is this the first time? I mean, does he ever follow that pattern before, like tics go for a bit and then come back? wht tics ramped up now? .. just trying see how this works for you vs. the sprio. (things aren't that great for us here in the way of tics either, but I'm another story, lol.. ) thanks Faith
  7. Michael, what is the treatment that you are doing now, what abx? Is this different than the clarith for myco p.? how did that wound up turning out? did dr.k. say anything about that .. or this?
  8. Patty I second that these seem to be ocd habits, I would not classify them as tics. If you ask him to not turn the faucet like that or turn off/on the lights, does it 'bother' him? he has to do it, or he feels 'bothered' if he doesn't? we've gone thru that with the retracing and erasing of letters. I can attest to ERP therapy helping this. it was really bad at one point, where it really upset him that he was doing this and could not seem to stop. the first step tho, I feel, is that they have to feel it is a problem and 'want' to be helped and want to find a way to have this stop.
  9. Michael why are you trying this out? how are things since the last IVIG? Faith
  10. Buster, just going along with your original post, you say 'untreated' strep.......but what if the strep IS treated somewhere down the line? my son does not have it now, hasn't in a long time that I know of, no high titers to substantiate, ...... so if he's had abx and is not sick now, ...why does he still have tics and other comorbids? This is the point where I just fall off and can't get past....... thanks Faith
  11. nevergiveup and kimballot, (and all who have replied here)... I understand and pretty much agree with what you are saying, but how exactly do they go about figuring out if autoimmune is the problem? For someone like me, who even after seeing two of the PANDAS docs, and being treated as such, I feel like I still don't really hve a definitive answer as to what my son's problem is. I'm not comfortable assuming anything. he surely has all the symptoms, maybe not all at once, but tics since 3 1/2, ocd. sensory, etc..... But so far, abx doesn't seem to do anything remarkable, and we don't have g
  12. don't know much about it, but if its not mandatory, tell him to hve a nice day......
  13. I'll start by saying I don't know if we are definitevely PANDAS, but we do have symptoms. and HELLO, we are having a rough time with math too, he's definitely falling off. We're fighting over it right now while he's doing hw, he doesn't seem to be able to figure anything out without calling me...hard to say, but the work does get harder, with all the different types of math, fractions, word problems, algebra and all that ......yesterday I got a notice for the first time for summer school for math only. man I was pisssed. first time, and he's in fifth grade. I was kind of the same way as a
  14. Maybe the mackeral? is it from a can? maybe it's omega 3, but having the same effect of increasing tics that some have with fish oil........ I'm thinking its possible there could even be minute amounts of mercury in the fish, but just speculating. Have some Rice Krispies the rest of the week and see what happens.....
  15. Just for the sisters......... .......(sorry boys.... ) "Why Men Pee Standing Up" Seems God was just about done with creating the universe -- but he had two extra things left over in his bag, so he decided to split them between Adam and Eve. He told them that one of the things he had left was a thing that would allow the owner to pee while standing up. "It's a very handy thing," God told them, "and I was wondering if either one of you would like that." Well, Adam jumped up and down and begged "Oh, give that to me! I'd love to be able to do that. It seems just
  16. coco, ... I was wondering the same as kimbalott.... Does your dd have any plan in place? it really makes alot of difference. however, I personally, don't feel it is in best interest to state anything re PANDAS for school purposes, its too broad and they don't understand all that it encompasses. So I think everyone should just stick to the individual symptoms, ie. ocd, tics, adhd, anxiety, etc. They cannot punish for those things, a plan will work around their problems. I can understand being admonished for poor behavior and having some consequences, but what you are describing is
  17. BigAl, While you are persuing the PANDAS connection, also visit the tics/tourettes side of the forum here, as you may find some useful information on how to manage your sons tics. If you don't find any strep connection, I do, however, think a 'trial' of an antiboitic such as augmentin or even amoxy might be worthwhile, just to see if it has any effect. good luck. Faith
  18. I don't think there is anything one can do to really stifle the urge to tic, wether it be making a vocal sound or physical movement,....we deal with vocals here, and I know my son would be very uncomfortable if he had to stifle it. However, I do think it should be okay for gentle reminders of how to deal with it in certainl social situations. it may not always be possible, and that is okay, but sometimes just a reminder to maybe try and keep it low (if they can) while in class or at times when it would be more obvious to others. Beleive me, I know its not always possible, but we have been d
  19. Stephanie, Is the spiro prescribed for autism only, just wondering? could I ask why your doc prescribed that along with the abx, or were you already on abx? Also, the issues you feel are resolved for the time being, ..had they ever been gone before for any period of time? I know you've wondered if it was the spiro that is helping, so just curious about that too. Did your doc beleive that the affects of the spiro would be this quick, or did he feel it would be a number of months before it had some positive effects, if any. Any side effects that you note? thanks Faith
  20. Is it just messy, or can you pinpoint any ocd problems such as scratching out, going over letters, erasing? Those were the problems for my son (altho his writing was impeccable), so his was more ocd in that it bothered him if it wasn't perfect. we have recently tackled that with ERP therapy (exposure and response therapy for ocd)...its a form of congnitive behavior. I really don't know how they would tackle messy handwriting, but in case you havn't, I would check out the book by Doris Rapp called "Is this your Child?".....talks about how some things like handwriting problems could b
  21. lfran, if you could, my advice is to wait til the tests are over, and only because some of us have observed an increase in tics (don't know if your child has that) on zith. I tried about a month of it, and felt he was better off them, but I definitely noticed an increase of his vocal tics, and opted not to continue. so just in case there is something, I'd say let him get thru the tests without any chance of problems, you never know. my son has a 504 and takes the state tests in another room due to his tics and ocd that can slow him down. again, dont recall offhand what your child's issues
  22. Did only one child have the ivig, or two of them? in terms of better, how can you really tell after 10 days or so? unless you know a child had bad anxiety every single day no matter what, then I would think that would be more apparent, but just don't know about how to gauge that. we havn't had treatments here, so not telling of my experience,..but I do see things like that come and go in my child, or at least be more apparent some days than others, just depends on the situation. I mean one day he could look like he feels like doing school work and other days, more interested in playin
  23. fixit, could you tell more about the taurine? are you saying when you first had the test, your child was on taurine? do the symptoms he had then correlate with these results? in other words, you say 106 in November,....were his symptoms mild at the time, all symptoms, tics? .....I am aware that your son's tics have ramped up considerably lately, so 160 I guess would correlate there. But you also know that you havn't necessarily had strep recently, so just saying again, really who knows what causes the activation, ... well don't cry, maybe good to take a break, lol.... you co
  24. Nice DebC, I thought this was informative and straightforward, ... good for folks in your part of the woods to hear about ocd and symptoms that could be triggered by strep........ and p.mom, you're doing a loveley job yourself!....
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