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Luna

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  1. This sounds horrible. I'm sorry you are both going through this. I can tell you what has and hasn't worked for my dd, who has suffered from very serious needle phobia, and is now recovering well. I tried everything you are doing and none of it worked. We ended up using multiple modalities to get her comfortable with blood draws and infusions. Here are the things that worked for us listed in order of helpfulness: 1- Exposure with Response Prevention (ERP) We have a wonderful therapist who has walked us through exposures. My daughter is still doing 20 min of exposure each
  2. My DD6 C3 and C4 have always been within normal range. But now following 3 IV solumedrol rounds her C3 and C4 are low for the first time. Any thoughts on why this might be? I thought low levels indicated autoimmune flare and that taking steroids would increase the numbers into the normal range, indicating the disease is in remission and immune suppression is working. Why would the levels drop with steroids?
  3. My Question- can anyone who has removed mold from their home or moved to a mold free environment respond to tell me what the affect was on your PANS child, if any? We recently learned we have a very bad mold problem in our home. Our PANS daughter was diagnosed 2 years ago, but we moved into the moldy house 4 years ago, and don't recall any symptoms or problems associated with moving in here 4 years ago. No one in the home has the classic symptoms of "mold illness", only PANS. Im conflicted because on the one hand I have our PANS doc saying the mold in our environment is fine and mo
  4. I've read on this forum that candida overgrowth can cause behavioral and psychiatric flare symptoms that can be mistaken for a typical PANDAS. And now, after several of these flares I'm starting to think what I thought of as PANDAS has really been Candida all along, or at least on several occasions. Questions-- 1) what are the behavioral/psychiatric symptoms associated with candida overgrowth? are they different than a strep induced PANDAS flare? 2) from my description, do you think she has candida, if not, what else could it be? 3) any treatment recommendations for candida overgro
  5. Anyone know the name of a company that does IVIG infusions in the home? We're in Northern California.
  6. Both my DDs are going in for MRIs with contrast this Saturday. Of course the MRIs are not diagnostic of PANDAS - the girls have already been diagnosed by history (mostly) and supporting blood work by Stanford PANS Clinic. The purpose of the MRIs, Im told, is to determine if and how much inflammation is on the basal ganglia. If there isnt any then the assumption is that the inflammation is in the blood only. The results will help determine if higher dose steroids to treat future flares will do more harm than good.
  7. thanks for your response! I'd love a recommendation of an integrative doc in redwood city. in fact, anywhere within 3 hours of the san francisco bay area would be useful:) thanks again.
  8. Has anyone seen Dr. David Traver in Foster City, CA for treatment of PANDAS? Was he good, did he help? Any info will help. thanks
  9. I'm looking for referrals to PANS-friendly pediatricians in my area: Sacramento, CA. My daughter goes to the Stanford PANS clinic near San Francisco for specialty care, but I need a pediatrician (not a specialist) who is close to us and willing to work with the recommendations Stanford gives. Thanks!
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