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BrooklynMom last won the day on November 9 2018

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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. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me. Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG? Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal. Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance. Good luck to everyone. Eva
  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 to. I stopped the oils because my son is too sensory to tolerate them but I do think it helped reduce the tics initially. Not a cure though. Eva
  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 trip to Philly and learned about Ben Franklin. We did little math. We only did math related to other studies and what he felt comfortable with. I let him tell me what he was capable of. He is much better now but still struggles with math and tics and concentration. He is in eighth and still homeschooling. Eva
  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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