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Calimom6

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  1. @tj21- That's interesting about the IVig dosing. I hadn't heard that before. My son had 1.75gm/kg. The infusion went well and he didn't experience any headaches. After the third and last dose, he was very tired and feel asleep for almost a day. When he woke up he stopped talking. I'm new to this site and I'm astounded by the amount of kids dealing with all these issues with so few doctors who know about all this. My son has been to the ER many times with no relief and doctors wanting to push the psych route. It's so sad how many nurses/doctors I've had to explain about PANDAS/PANS to.
  2. Thank you @tj21. So sorry to hear your son has been battling both too. From their website-The UCSF Multiple Sclerosis Center is one of the premier centers in California for caring for patients with MS and other inflammatory diseases of the nervous system and is internationally renowned for providing high quality, patient-centered healthcare; for improving the quality, safety, and efficiency of that care; and for providing timely and appropriate access to neurological evaluation and treatment for people with multiple sclerosis, neuromyelitis optica, transverse myelitis, neurosarcoidosis, chroni
  3. Thank you @boysrlove24. Yes I have actually. It is looking like he has some type of autoimmune encephalitis as well. We are waiting to get into UCSF MS/Neuroinflammation clinic. Fingers crossed he gets in. It's been a long road to find out what all is going on with him. Hoping he gets some relief soon!
  4. My young adult son has been battling PANDAS/PANS for a little over a year and went downhill after IVig in January and is highly incapacitated. Desperate to find a neurologist and immunologist with PANDAS/PANS experience in the greater Sacramento area who treats adults. Any doctor recommendations would be greatly appreciated!! Thank you!!!
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