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LJsAdvocate

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  1. LJsAdvocate

    Supplements

    I desperately want some guidance in starting my son on some natural vitamins and supplements for his OCD. I am in New Jersey and I am at a loss for what type of doctor to even contact. I don't want a prescription, but I would like someone experienced to help us through this process. Any advice on a specialty area or type of doctor that might help with this?
  2. So, after almost 4 years of wondering and doubting the "PANDAS" diagnosis for my DS, we finally have a positive rapid strep... I have been noticing a terrible flare recently and asked the pediatrician to do a rapid strep. No fever, no symptoms. but the rapid strep came back positive. (of course the whole office thought I was crazy until the test came up positive). Our pediatrician prescribed Omnicef for 10 days. On Augmentin, Ds's behavior improves but after 4-5 days, tics worsen significantly. So, I am not sure what we will see with the Omnicef.... I felt a weird sense of relief and happiness to hear the strep test was positive, I actually cried. I felt like it was confirmation of what I knew in my gut all along despite the nay-sayers. I just hope this Omnicef kicks the strep quickly. I just wanted to share this experience out there for anyone doubting that PANDAS is real.... because it took me 4 years to really believe it.
  3. LJsAdvocate

    Baquacil, Salt Pool?

    Hi!! I have read many posts about chlorine and its negative effect on tics. My son is clearly affected by chlorine. We want to put a pool in this summer using an alternative to chlorine. I was considering the Baquacil products, but I was hoping for some feedback from someone here. Many also mentioned the Salt water system for pool, but that is still chlorine (although much less).... but that still concerns me. Anyone out there with experience on Baquacil OR Salt water pool...OR any other alternatives?? Thank you
  4. LJsAdvocate

    Dr. Bouboulis- What to Expect?

    Thanks hopeinHIM- How do I go about finding out how he detoxes and any methyl issues? Can you recommend someone in NJ? Also, do you have a good allergist/immunologist in NJ? We did some allergy blood tests with Dr. T and it appears that my son is slightly reactive to everything, so I am confused/overwhelmed. Also, Dr. T ran all the lyme and co-infection stuff through Labcorp. Only one band present on western blot... is this worth digging deeper? Thanks for your help, I am lost for where to begin as its all very confusing!
  5. I am preparing for an appointment with Dr. B on September 1st. Can anyone offer some insight into what to expect at this appointment? A few specific questions- Will blood be drawn in the office at the time of appointment? Does he look at a variety of things outside of strep/infectious triggers like allergies, heavy metals, vitamin deficiencies, etc? I have dealt with Dr. T in the past... How is Dr. B similar/different? Can follow-up be done via phone consult? Thanks in advance. We are traveling from NJ to CT so I want to make the most of this opportunity.
  6. LJsAdvocate

    PANS or TS? Please help

    Lyme was ruled out, negative results. Symptoms include urinary frequency and this past week he wet himself three times. We treated with a combo of abx for approx one month (March-April) but then started experiencing vertigo and tinnitis so we backed off the abx. Anti inflamitories do provide some relief. I am stuck at the crossroads of going with more antibiotics or looking into other triggers like diet, etc. I am not confident that we are definitely a pandas case... Allergy testing showed positive results for nearly every thing, milk being the worst with IGE around 6. He's also very sensitive to food dyes and additives. So I'm all sorts of confused!
  7. This is my first post on this forum, although I have been following for years. I would appreciate some input/opinion/feedback as I am trying to determine what direction to go in helping my son. A quick summary: Feb 2013 we had severe and rapid onset of OCD, tics, behaviors, the whole typical "PANS" deal. We suspected an infection-triggered scenario, but were unable to find the right doc at the time. After some diet restrictions and time, my son made a full recovery by July 2013. He went to Kindergarten and stayed baseline for two years. Again, this Feb 2015 his symptoms resurfaced... tics, anxiety, the behaviors, etc. Please consider these blood results (Done through Dr. Trifilleti) and help me determing if I a dealing with PANS here or if I should be taking a traditions TS route. Found Dr. T after recovery from initial onset. Some blood work done on December 2013 during healthy time showed ASO= 10.1 and DNase-1; Myco was 1918. Dr. T concluded that his symptoms were likely related to the "old" Mycoplasma infection titers found. Fast-forward to second round of symptoms: March 2015 ASO= 170.6 and Anti-DNase B=518 Myco was still elevated, but coming down. Are these strep numbers a big enough jump from the baseline blood work done Dec 2013 to cause a PANDAS flare? Am I dealing with infection-triggered symptoms here? I should mention that we didn't have any signs of a strep infection. July 2015 showed ASO down to 128 and Anti D-Nase down to 404, but we are still symptomatic. I have a consult with Dr. T tomorrow and I would appreciate any insight and advice on how to proceed- PANDAS route or accepting a TS/OCD Dx?!? I am confused with all of it and all I want to do is help my little boy. Thanks
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