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Found 8 results

  1. Can anyone speak to their experience with having a child who carries both a diagnosis of CVID and PANS? I am wondering (hoping?) that my 12 y/o son's PANS symptoms will improve and stay better now that we have discovered that his hypogam is actually part of CVID, but I can't find any information out there on how monthly IVIg for CVID manages PANS symptoms. I am freaked out that my needle phobic kid will have to receive monthly IVIg for the rest of his life, but if it means that he can actually get better, have some quality of life, and have periods of remission, then we have to do it. I just
  2. Hello I'm a 24 year old female from germany. I try to make it as short as possible, thanks for reading . I've always was a sick child but the first time I really realized I was getting more sick and sick every day was around age 11. By now I pretty much had every symptome related to pans/pandas. I had my first tic at age 3. I would start stretching my limbs into every possible direction and stare into nothingness for hours, I also had sudden movements. I can't remember but my mum can. It went away by itself. By age 6 I started to have severe anxiety. From that time on I was scared of everythi
  3. Hello all you amazing, fighting Moms and Dads, Was looking for a holistic doc in the NY/CT area who treats Lyme/Pans and made an appointment with him. The other 2 integrative docs were much more expensive so I'm a bit worried that he isn't as good. Hopefully it's just capitalism trying to trick me :-) If anyone has or knows of this doc any info would be greatly appreciated. The other two crazy expensive docs that I'll take her to if need be are Kenneth Bock in Red Hook, NY and Elena Frid in NYC. TIA and best wishes to all!
  4. I ran into someone in upstate New York named Will Cook who had put his son through 2 years worth of antibiotics before his son's white blood cell count dropped and he ended up going down the path of essential oils. He has this thing patted down to a science, the usage of the essential oils, and detoxing. He is a pastor who spent a lot of the last 3 years studying about PANDAs and PANs and in 4 months of essential oils usage, his son came out of the motor tics, mood swings etc. and has never looked back. I am in personal touch with him and he is helping my daughter with a personalized plan.
  5. If you have had this panel ran, I would like to know what symptoms your child is experiening. My son tested highly likely after his symptoms flared but he has also been diagnosied with another medical condition (POTS). I know some of the symptoms that he has does not belong to POTS and I was trying to figure out what goes with the anti- neuroantibodies that are found in the Cunningham Panel. My son is still in this study and the second part of the study deals with the antibodies for the heart. These antibodies have also been found in my son. I understand that these antibodies are associated wi
  6. My son had ivig feb 26/27 and has had two pretty significant rages since. At first he seemed so different but now I wonder if that was some kind of placebo effect. I have read everything I can find about turning back the pages and herxing but I guess I am now wondering if I'm just trying to make all the info fit my situation. I don't want to lose hope and give up. I feel so lost and alone. He is not impossible acting all the time which makes me wonder if turning back the pages even applies. I guess I would just like to know if I need to change everything I'm doing. He had HD 2g over two day
  7. My ds9 is having his first ivig next week in our home. I fear he will not be able to follow through because of his fear of the iv. Any suggestions about how to prepare him? Also I know each situation is unique but what was the first sign after ivig that you were on a good path for recovery?
  8. We are trying to find our way. I would welcome any help. DS 9 dx pans, sep anxiety mood dis nos. if anyone has Los Angeles based referrals please share!
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