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I have a child who has had lyme and recently been diagnosed with PANS. Who is the best doctor for this combination of illnesses? What are the alternatives to IVIG? Is the Cunningham panel the best way to diagnose? thank you … I am new and a very worried parent.
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Hello all, I'm reading this forum for almost a year since my child DH was diagnosed with Pans caused by Lyme. You guys are inspiring and I learned so much here, though never posted before. DH is 7 years old. She was diagnosed with PANS very early in the game (with vocal tics and some phobias but nothing more), but her Lyme was diagnosed late (probably 3 years in), with many co infections we're treating with ABX. Our main struggle so far was mainly with vocal tics and some minor motor tics. It wasn't fun but manageable. 6 weeks ago DH had her first IVIG, followed by a 2nd treatment a few days ago. In the last few weeks we're seeing a severe regression with her tics. Her vocal tics are almost constant, and she has a meaningful flare of new motor tics which basically force all of her body to move. It is intense and sometimes hard to watch. My girl has changed. The regression is noticeable and scary. Our doctors have told us this might be a very normal phase towards healing, though it doesn't feel like that. They claim the IVIG can stimulate exacerbation of tics that the body is fighting to get rid off. They ask us for patience tho my wife and I are terifired, so as our kid. DH has never suffered from any mental symptoms. She's is great at school, funny, focused. But the last regression is paralyzing. She feels it. Her body is just flared with tics that take us all backwards. Are you aware of a successful IVIG that starts with regression of symptoms? Are you aware of a severe motor tics regression after almost one year of ABX that is working clinically wise? Could that be a path to healing or maybe a bad sign? Am I missing something? Any shared experience would be so appreciated. Many thanks!