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Luna last won the day on March 25 2017

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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 day (her "homework") because she is still slightly anxious around needles, but she is well on her way to being fully recovered. I put this first on the list because we tried the following three treatments before taking her to a therapist to do ERP and the three worked a bit, but this one has done the most good, by far and away. And has created actual healing. If you only try one, this would be my recommendation. 2- Xanax given 45 min before blood draw 3- lidocaine cream applied twice before blood draw - 60 min before and 30 min before 4- Buzzy the vibrating Bee (buzzyhelps.com) placed near the site during draws.
  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 moving would be useless and have no affect on PANS symptoms. On the other hand Ive read it can cause a flare. Id be forever grateful to hear from anyone who has removed mold. What happened to the PANS symptoms? thank you in advance for any time spent reading or responding to this.
  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 overgrowth? DD6 was diagnosed with strep throat and PANDAS two years ago and had a remarkable turnaround after antibiotics and oral steroids, but no return to 100% baseline. She was then diagnosed with Lyme a year ago and we are taking the slow and steady approach to treating lyme with our LLMD. We are also treating PANDAS flares with oral steroids and now more recently with IV steroids (solumedrol), with the hope that she will not need repeated steroids in the future as the lyme dies off. Over the years she has on several occasions experienced acute episodes of: a red rectum, red vagina, agitation, anger, fears, separation anxiety, and sensory sensitivities - but coupled with normal perianal culture and normal urinalysis. All of this (perianal redness and aggitation, normal test results, etc.) came back with a vengeance following her recent IV steroid infusion. Im thinking its Candida. Any thoughts on it being something other than candida? Her Current Treatments Are-- GAPS Diet daily prophylactic amoxicillin Beyond Balance MC-BAR-1, MC-BB-1, MC-BAB-2, Mycoregen, MC-BFM-P, IMN-V-II DesBio Upper Respiratory Staph and Strep Klaire Labs Ther Biotic Complete, and Klaire Labs BioSpora Prescript Assist Probiotic Glutathione Tri Fortify orange Takesumi Supreme Thank You for any time spent reading and responding to this post, as I am second guessing my entire treatment plan for her right now.
  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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