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BrooklynMom

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  1. Hello, My son has been suffering with PANS/PANDAS since age 8. He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better.
  2. I noticed certain probiotics make my son's tics worse and some make it better. I would not push it. Find one that works and decreases the tics and stick with that one. Eating fermented foods helped my son a lot (miso, kimchi, pickles etc.)
  3. http://yaledailynews.com/blog/2017/02/21/vaccines-linked-to-mental-disorders-by-yale-study/
  4. I tried it. Helped a tiny bit but hard for sensory kids to tolerate it. I spent way too much and bought all the recommended oils. I wouldn't do that again. I spoke with Joshiah's Oils a year later. The owner has a Pandas kid. She recommended fewer oils. Much less expensive. I would start with only a few oils or maybe even one and then add one at a time so you know which one is working. All oils have an energy frequency and throwing too much at the kid at one time is not a good idea. I've learned the hard way with supplements. Start low, slow with one or two and then add if you think you need
  5. I started to homeschool my son about a year and a half into PANDAS. I didn't know what was wrong but I knew he had seriously declined in school and needed to be home. The first year was crazy. He would run and hide in the closet if I asked him to do any math. He insisted he didn't know how to add or subtract multi-digit number even though I had been doing homework with him for years and knew he had been doing it since K. I was confused. That year I mostly "unschooled". He picked topics and we pursued those topics. We spent months reading about the civil war and watching videos on it. We took a
  6. My son is 13 and has had PANDAS since age 8. He had IVIG in Oct and is worse now that he had been after 1 year on Azithromycin. He has elevated Anti-GAD. Does anyone know if the Anti-GAD is related to the motor tics? Has anyone's child gotten worse after IVIG with no improvement? Thank you. Eva
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