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sosudden's Achievements

  1. I used to always be amazed my dd rarely got sick when she was little - snotty noses and fevers all around but dd rarely "caught"anything!!! No behavioral issues when really little EXCEPT looking back heightened separation anxiety and fear and unexplained hives AHA probably the begining of PANS.
  2. Figured out PANDAS on January 23rd 2011after googling "OCD & STRANGE MOVEMENTS". Saving Sammy popped up and I read a paragraph and watched a video of him and basically screamed THIS IS WHAT MY DAUGHTER HAS!!!
  3. I would say go the Naturopath or LLMD route. ID doctors, from what I have heard AND 1st hand experience, are not very helpful. My DD was followed by an ID Dr for osteomyelitis (bone infection) she got in her foot bone after stepping on something and getting 3 stitches!!! Within 24 hours!!! So pediatrician made us go to Childrens Hospital to be admitted and she was there for 2 days receiving IV antibiotics (followed by 8 weeks high dose antibiotic combos). Anyway, at her 1st follow up a week out, the arrogant rude ID Dr walks in and LITERALLLY the 1stnext question is if dd has had the flu vaccine (I I had said no in the hospital.)I She then continued to pressure me about this for 5 minutes basically having a staredown with me (& I am so not confrontational). At the next and last follow up I asked her about some labs that were out of whack and she said that it was normal for my dd and most people don t believe PANDAS exists! (
  4. Oh yay!!! Those glimpses are wonderful and what we are fighting for!!! Yay!!!
  5. Ivig is what brought my dd back. We have tried several SSRI throughout this journey that did not help and or made tjings worse. She has gone months without any at all. Her total sadness and depression was palpable so she has founf some relief on lexapro. These kids suffer so badly. If the antidepressant is possibly helping then i say dont stop it now. Just my opinion. Dd was on prozac when she got ivivg. Although it did nothing to help her dr K did not want us changing too many variables. You can sort it out at some point but if it is helping at all...
  6. Yes please do!!! Thanks! Hows your girl doing??
  7. Yes - looking back it was in the works for awhile... and she too got the flumist right after her 9th birthday...
  8. I have wondered same thing about age and vaccine lot???? My dd is 10.6 and her "falling off that cliff" episode was right after she turned 9....
  9. Dr Bob Batterson @ Childrens Mercy in KC, MO.
  10. Very important part of dd healing! She was 9 almost 10.
  11. Google Adrenal Fatigue. A good start. I realized it was time to start taking care of myself too or I will be no good to anyone much less have the stamina to keep up with this difficult autoimmune disorder.
  12. My dd similar. Dont know for your dd but sometimes the ocd thoughts make her act this way. And all thiz about but how does one check this??? No outward yeast signs so how do I explain/ask her pediatrician? Or what is the best and easiest supplement to give to fight yeast?
  13. DD10 iggg subclass 4 also elevated - 160s both times. Others were within normal range tho some low end of normal. I will be interested what you find out.
  14. We have BCBS of Kansas City. Denied coverage. Appealed. Denied appeal. Got IVIG in Chicago, Dr K. Paid out of pocket and would do it again as it brought our DD back from the edge, some symptoms resolved instantly. Here is the jacked up part - we got very minimally reimbursed for Dr K and for Oakbrook Surgical center BUT they would not reimburse at all for the actual IVIG?? Which of course is the biggest cost $$!! There has to be a change sooner than later because IVIG is what a lot of our kids need!
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