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Everything posted by eljomom

  1. lmkmip67---you are an inspiration, actually. thanks for sharing this. your son sounds like he is quite functional. wondering why dr. b is still giving him IVIG? What symptoms does he still have? Did the IVIG help at all? We are still in the limbo stage where my dd is functional, but has tics, ocd-ish stuff, adhd....and not sure IVIG is the answer. yet.
  2. @minimaxwell---what trial is Gellar and Jenike starting? Do you know? Also, I have heard the opposite...that IVIG doesn't work as well for tics.
  3. dcmom---curious about your courses with steroids. You seem to be the one person who ALWAYS posts in response to these steroid questions with an overwhelmingly positive note. I also notice that your girls are the only kids I've heard mentioned who receive steroids via IV. I know there is a gal on a facebook forum, and another person I can't recall, but just recently have seen a posting, who also went into LONG remission with IV "pulse" steroids. I am wondering if maybe your girls' positive response is due to the manner in which they are receiving the steroids, as well as the dosing. Of course, there are others here who have had positive and long-lasting results with a typical burst or taper (although the number seems slim for the LONG-lasting improvements, at least on this board), but I really am wondering more about the high dose IV steroids. I was wondering if you could elaborate on the dosing your girls have received via IV vs. a steroid burst (oral) vs. steroid taper (oral)? Also, wondering if complications and side effects are minimized if given via IV......? Thanks!
  4. Could it be the CANS article? Or even the new PANS white paper?
  5. my daughter got strep (asymptomatic except for increase in tics and night terrors) on that dose of zith.
  6. bigmighty---did your child have a T&A??
  7. what is one to do for "prophylaxis" if a child has ivig and is PITAND? you can only "prophylax" with antibiotics things that abx will prevent, right? so I guess that is why they aren't trialing IVIG on PITAND kids. But truly, I am asking, what would one do? Was this when they were using once daily Amoxicillin as a prophylaxis? I could have told them that wasn't going to work. So, after they 2nd IVIG, they didn't put your son on a better prophylaxis? Geesh. Well, hopefully when they publish, they will make it crystal clear that aggressive steps (not once daily amoxicillin) to prevent Strep post-IVIG are needed, or a relapse WILL happen.
  8. michiganpandas---do you think the atarax helped because it helped with postnasal drip? or does it work somehow with the brain to work on the tics/anxiety?
  9. still bugs the tar out of me that PANDAS is "onset of ocd or tic disorder" while PANS is just "onset of ocd." It's like they are still saying that the ONLY thing that can cause an abrupt onset of tics is strep.
  10. mkur---why are you happy about no mention of tonsils? curious....
  11. DD8 just got her palate expander about 2 weeks ago. I was worried about this too, but we've seen no change in her chronic pandas symptoms. She actually did much better than I expected (and better than I warned the orthodontist about) during the pre-appt.s with molds, etc..
  12. TV makes my dd's tics nonstop. Has your son had tics for 4 years without ceasing? I am about to jump over to the tic board at this point for my dd...or the ocd board.....I feel like we are in the chronic state now
  13. Read this article!!! I e-mailed Caparetti and cc'd dr. cunningham. wish these docs would all put their heads together....we might get somewhere with all the brilliant minds if the could find a way to work together and share information.
  14. interesting statement about intestinal mucuosa, when inflammation is present, the infection seeps through the mucuosa into the bloodstream, and the toxins can reach the brain. I know there was a pandas symposium a while back, but what about a microbe-triggered neuro symposium--non-specific for the outcome. Meaning, whether it's autism, lupus, tourette's, pans---just get all these docs from all over the world together to put all the pieces of the puzzle together. I know they are out there. We, as moms and dads, are always finding this little piece or that little piece, and I'm sure it's not only me who keeps saying to myself "THAT HAS GOT TO BE A PIECE TO THIS PUZZLE!!" The symposium could work together to make the box cover to the puzzle.......yah, I'll get right on planning that one
  15. Kiera--I think, if I remember correctly, mati's mom had her tonsils out (the mom) and she tested positive for pseudomonas too. You might want to touch base with her. She's not on here much anymore, but would still reply to a PM. Also, what do you mean by hyponasal? My dd had her adenoids (only) out 2.5 years ago (before knowing about pandas) due to chronic URI's, snoring, etc. She STILL mouth breathes. Still mild snoring/breathing loudly through her mouth.
  16. what is the craziest thing arial95, is that the culture of the tonsils came back negative!! Is he testing positive ONLY on rapids? I have "heard" (again, total hearsay) that there can be a false positive on a rapid but can't remember what it was.......but then again, if he's also having pandas symptoms, that's a different story. Gosh, so frustrating I can only imagine...
  17. thenmamma---wow, I thought you saw the same pandas doc as us. she wouldn't consider ivig without doing tonils prior. and in our case, we don't have repeated strep, large tonsils, etc. very curious. we were told there is no point doing ivig if there is strep hiding in tonsils because it would just come right back...
  18. Hi Dedee- I am also sorry I don't have advice either I can say that I totally relate to that let down after thinking "this might be the golden egg!" We've had that on a couple occasions, but it never amounted to anything for us. I also will say that when we first started trying abx for pandas, we did a month of augmentin, and I believe it made my dd worse too. I think I just read another post about this from a parent here recently too. Some will say "it is a herx, your child has LYME," but I"m a bit skeptic of that. I do think that some of these abx do have affects on glutamate---thinking augmentin is one of them, and wonder if that isn't part of our kids doing worse on it. I wish I knew more, and am so sorry that you are feeling that oh-so-familiar feeling of dangling off the edge of a cliff by a thread....
  19. He really sounds like he'd be quite thorough with this....if I lived on the west coast I'd be seeing him! The only thing I can't get over is that he calls Pandas....Psychiatric and Neurological....not Pediatric Autoimmune Neuropsychiatric...
  20. I have heard not so great reviews of those tests, even from a certified nutritionist, who generally believes in that type of testing. If they were accurate, I would think psych's would utilize them more frequently in order to determine the best meds, vs. the crapshoot method they use now. I know, some will say they don't use them because it keeps them in business.....but what I have "heard" is it only tells how much neurotransmitter is in your blood, which really doesn't tell you much about how your brain is using it.
  21. Curious what kind of bumps/rash on his face/arms? My dd seems to get sort of reddish cheeks that are just a little bumpy now and then.
  22. I agonized over this for a long time, and finally decided to do it. We had NO bumps from it whatsoever. DD is 8 as well. She didn't show up anything but walnuts (although I don't think they did a very complete panel....more just to humor me). I asked on the forum this question a few months ago, and the overwhelming response was that it would be fine. And it was.
  23. Please keep us posted Kiera! Is Dr. L your neuro who recommended the T&A?? How did they see the sinuses? Also, can you remind me of your ds's symptoms leading to IVIG? Thanks! Still trying to decide about Tonsils out...
  24. Tracie---may I ask what her symptoms were? Did antibiotics help prior to IVIG?
  25. ugh---I AM scared Can you elaborate on the child developing an autiantibody production? I thought that's what was happening with pans anyways? Does he mean that once they have it untreated for a certain amount of time (or say, when antibiotics do NOT help) then it's always there?
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