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Sham7rock

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  1. My 13-year-old son is very close to having his first IVIG infusions. I'm very nervous about doing IVIG as I have had it for my autoimmune condition and I had a bad reaction. I am very IgA deficient and even though I got Gammard SD washed of IgA there were still trace amounts and I had a serious reaction. Needless to say, my personal IVIG reaction is making me very nervous for my son. His IgA levels are only slightly low so hopefully the IgA aspect of reactions is a non-issue for him. I'm looking for your feedback on your experience with IVIG. How did your child do during the infusions? Af
  2. I'm so sorry I disappeared on the forum! Things have been crazy with trying to figure out how to get my son the treatment he needs, keep him occupied now that he has been out of school for 4+ months and we have to move in 2 months so trying to get ready for that. I'm also a single mom with autoimmune issues of my own. PANDAS sucks beyond belief and it blows my mind there are not more providers who are willing to step up and help. I really appreciate each of your responses to my questions. I also got a little overwhelmed reading the forum and had to take a break and just focus on what was i
  3. Dr. Gbedawo is fabulous! The only one I've been able to find in the Seattle WA area to really pick up the ball and help with PANDAS symptoms. My son is 13 and major symptoms started late Nov. 2016. It took a little over 2 months to get into see Dr. Gbedawo, but it was worth the wait.
  4. Is there any sort of PANDAS support group in WA State? I've posted a few times looking for resources and have only heard from two people in my area - surprised there are not more . . . I may have to branch out to OR & CA! Desperately seeking resources and would love to connect with another family who has gone through this. My son is 12 - (13 tomorrow) and I would love for him to have a chance to talk and hang out with another kid who has been through this. I know he is super confused and scared about all this, but he continues to have a brave face and even says, "Don't worry Mom - its all
  5. Hi MissionMamma - I'm still figuring out how this forum works and didnt realize you had replied. Yes I am referring to Seattle Children's Hospital. We have seen Dr. French in Psychiatry and Dr. Skoda-Smith in Immunology. Both were clear they are not PANDAS specialists. We were supposed to see Dr. Ming in neurology, but they called today and switched us to Dr.Vlcek. - no idea if he is PANDAS friendly or not. Good advice about just not mentioning PANDAS! Wow I'm blown away when there is clear literature and a PANDAS/PANS clinic at Stanford that there are not more resources at Seattle Childr
  6. Thank you so much makeitfromscratchmom. Helpful to have options. Still would really like to track down a neurologist in Seattle who is PANDAS friendly. I'm blown away Seattle CHMC doesn't have more options of physicians who specialize in PANDAS!
  7. Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he had no symptoms of strep, thankfully we tested and surprisingly he tested positive for strep again. I'm specifically looking for: 1. PANDAS friendly physicians in the
  8. Hello - I live in Seattle, WA and am in the process of having my 12-year-old son diagnosed - he has all the symptoms of PANDAS including recurrent strep throat (at least 1 or 2 times per year since K and he is now in 7th grade.) We also have a family history of autoimmune issues and rheumatic fever. Strep was diagnosed last in October 2016 which we treated with antibiotics. When erratic behavior began at the end of Nov he was a-symptomatic, but tested positive for strep again. I'm specifically looking for: 1. PANDAS friendly physicians in the Seattle area? 2. PANDAS families or a supp
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