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Sonshine's Achievements

  1. DS17 has IGG, IGA and IGM that are lower each time we test. He responded to 6/23 serotypes after Pneumovax. He has specific antibody deficiency and selective IGM deficiency. IGG went from 1011 to 830 (694-1618) IGA from 140 to 90 (81-463) IGM from 40 to 18 (48-271) subclass 3 is low (23) I understand from immunologist that specific antibody deficiency can progress to CVID. Does anyone have experience with this? I thought I understood these levels should be rising into adulthood not dropping?
  2. Can anyone who was at the conference share what they learned? In the past, there have been videos released to the public, but I understand the speakers declined to be taped. Someone on the forum mentioned there was new information regarding immune abnormalities. Always curious about the latest research.
  3. DS has had a flare with a sinus infection also. He has had ear, throat, sinus, skin, UTI infections starting at 9 months and was recently evaluated for immune deficiency. He has specific antibody deficiency and we are following up with an immunologist for further workup. Is your son's pediatrician concerned about 5 sinus infections in the past 3 months? Is this the same sinus infection that is not being cleared by antibiotics? If your son has been treated for PANDAS in the past, will that doctor make a referral? Hopefully someone will come along and recommend a doctor in the DC area. Hope you get the help you need.
  4. Maryaw: We re-vaccinated with Pneumovax 23 and DS17 did not show an adequate response. His strep titers increase with exposure to strep even on antibiotics. We are waiting to see immunologist in April. I wonder if he will recommend monthly IVIG? It sounds like your doctor mentioned that in your case, if abx didn't keep your dd infection free? If I might ask, were all her other immune function tests normal, IGG, IGM and subclasses? I wonder how common it is to have specific antibody deficiency and how it is related to pandas. Did doctor weigh in on that? Thank you for any input.
  5. tj21 - happy to hear you got insurance approval. I hope you see improvement with IVIG. My son failed to show adequate response to pneumovax 23 and varicella. Referred to Dr. Lewis at Stanford for full immunologic workup and also hoping to be approved for IVIG. Best Wishes. Stay Strong.
  6. Kim: Thank you. Just got a call that our doctor uses the criteria outlined in the paper you provided the link to. DS only had a response to 7/23 and has been referred to immunologist for further workup. I know there was an old thread about this, but I wonder how many of our kids have an underlying immune deficiency? DS has had ear infections, sinus infections, skin infections (impetigo) and pneumonias (myco P) since birth. I'm quoting others who have said "something opens the door for PANS/PANDAS.
  7. Also, DS shows protection for tetanus and Hep B but not varicella?
  8. Can those who have been diagnosed with immune deficiency, weigh in? Do post vaccination titers need to be above a certain level? I've read greater than .35, greater than 1.3 and greater than 2.0 ? If values are below that but are 2 fold or 4 fold pre-vaccination titer, is that a sufficient response? DS has had symptoms of Selective Antibody Deficiency since birth.
  9. pr40 - yes, encouraging for families that duration of illness was not found to be a factor in benefit from ivig.
  10. http://pandasnetwork.org/research-highlights-positive-treatments-more/
  11. Anyone have similar Moleculara results? Blood was drawn while DS was not in a flare. The only result out of range was tubulin (2000) which is twice the high end of normal. CamKII was 120. DS does not have tics, but does have OCD remaining even between flares. Does this mean he has anti brain antibodies in his blood and that his symptoms could improve with IVIG or PEX? I have read on the forum that beta tubulin antibodies are found in kids with sydemham chorea and PANDAS. Would normal controls have beta tubulin antibodies for any reason? Any input appreciated.
  12. Maryaw: It was a difficult decision to make. The vaccine was given three weeks ago (so far no flare) and titers will be drawn again in a week. Doctor wants to rule in/out a primary immune deficiency and also if there is not an adequate immune response to the vaccine, insurance is more likely to pay for ivig.
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