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Everything posted by jph

  1. My PANDAS/PANS (not yet sure what/which, tho dr. thinks PANS) son's immunoglobulin testing blood tests came back. Everything was fine except that his strep titers are very low, indicating (via the nurse who gave me the results) that his body is unprotected from strep. Dr. recs giving him the PCV 13 vaccine (13 Streptococcus pneumoniae strains) then test titers in a few weeks to see if it works. Questions/thoughts: 1. Why are strep antiobodies absent? 2. If the problem w/PANDAS is that he's not making antibodies to strep when coming in contact w/it naturally, how is the body going to sud
  2. There is something called theallergykit.com that is based on naet, but you buy the kit and do it at home. There's a money back refund, though it isn't expensive to begin with (coming from a mom who paid $95/tx in the office for something similar until I found this). Anyway, there's a PANDAS vial that you can use after completing the initial 7 or so vials. I did the vials on my son, and then bought the PANDAS vial. It didn't do anything for him, but then again I don't think strep is his trigger. The initial vials were highly effective though.
  3. My son is having a horrid period of tics right now. His tics turn into/cause/... full body seizing-like activity that are now sucking the breath out of his lungs. They've never been this bad and I'm quite terrified. WWYD? Is this normal?
  4. I *think* the implication of calling anything an allergy is that if the body is reacting in a way that creates an imbalance to a substance/thought/allergen/whatever, that by treating them with that substance/thought/allergen/whatever, a neutral reaction can be attained. It sounds really out there, but I'm willing to try it. My son has tics and during the one where he gets *really* angry and has what looks like an angry seizure/tic, he yells, uncontrollably, "I hate girls!" Girls, girly colors, girly things, his sister... they all trigger this tic. It's a really, really tough and odd one to liv
  5. On my journey of trying to figure out what exactly is wrong with, and help, my 8 yo ds with many atypical neuro activities, I found theallergykit.com. I have no affiliation with them. I've been looking at their web page for a few days, and considering how it might help. We've had significant help using treatments like AAT (kind of like NAET) for some things. So as I was filling my cart today, I see there is a vial for strep/Pandas and another for Lyme. It can't hurt, and it's pretty inexpensive! I thought I'd share here.
  6. Thanks smartyjones. Great advise about not needing to carry it all alone. It's so hard to let go, to just survive and not let the "other" things stress me out. I feel like I've tried so many different holistic routes.. that I'm wanting to check on infections now. (Yes, in the same day that I was concerned about which route to take, I've decide I need to at least find out what's triggering him.) So, we will see Dr. K. To answer your questions, 1. I have zero idea what the infection(s) are. Where do I even start to look?? 2. I have no idea what immune modulating techniques are. A google search d
  7. Are you saying it might be more beneficial to see a Lyme specialist first, bc they can order all the tests I'd want? Do you have any suggestions for other tests I'd want to have done?
  8. Thank you for sharing how your anger comes on with your daughter! It's all new to me as far as understanding what's actually going on. I appreciate having others' words of wisdom. What other things (besides testing for strep titers and myco p titers) should I put on my list? Anyone?
  9. Today has been a terrible day. Tics are 10/10 in intensity and frequency and I'm not sure I can handle one more tic. DS and I did make a few discoveries in the past 24 hours. #1 *Thoughts* make him tic. No joke at all, when a "girly" thought (pink, for example) of a thought of a girl crosses his mind, he tics, and it's a nasty one- his eyes roll to one side, his face grimaces up, his neck turns to the side, his fists ball up, his shoulders shrug, and he loudly whispers, "I hate girls!" Over and over and over. Like hiccups or sneezes, they come in bunches. #2 He does NOT tic while playing video
  10. I'm quite sure ds, 8, has PANS. Though he's never had a flare as nasty as the first (acute onset), he does cycle in terms of moods, he's had tics for 2+ years since it started, and he presents right now and for a while now with what appears to be Tourette's. I have several options I'm weighting right now about where to start, and I would desperately love those with experience to tell me what you think. First, what I've done for the past 2+ years: Alternative allergy treatment center with many food sensitivities being treated (no environmental allergies came up on the tests)- but none of t
  11. I live an hour from Dr. K and just set up an appt with him for early next month. I'm pretty sure my 8 yo has PANS but not PANDAS as I do not think it is strep related, since he has been around strep many times since his first acute onset and not reacted. I read somewhere on these boards that Dr. K is very good with PANDAS but doesn't dig for other triggers. Obviously location is easy but I would travel anywhere to see the dr who would be *best* for PITANDS/PANS. Suggestions/thoughts? Thanks!
  12. About 6 weeks after the sudden onset of symptoms (ocd, rage, self-harming behavior), ds was given a course of abx for an (unrelated?) sinus infection. The abx caused some of the symptoms to disappear *immediately*. They never came back in full force, but it took many months for the ocd to fade away, and he started doing these "wierd" things. For a while I thought it was sensory things; I was unfamiliar at all with tics/Tourette's. These "wierd" things stayed for the next several years, mostly on, sometimes off, changing in intensity, frequency and what they were. Only this year did someone in
  13. Two years and six weeks ago my ds (now 8) had a sudden onset of rage/anger/ocd/sensory things following a fever which have developed into what I believe is now Tourette's. I'm not sure if it was PANDAS or PITANDS but believe it was one or the other. If this whole thing began from infection, am I completely off base thinking it can be cured with nutrition? For the past two years I've been exploring allergy avenues/gut issues but have had zero results, though several drs/health care providers still tell me that treating food sensitivities will be the answer. What avenue do I begin to take if the
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