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Found 5 results

  1. Hello, mamas (and dads, and grandparents, etc!). I haven't posted anything for a long time, possibly because I haven't seen any new hope, any doctor that is willing to help, and our funds to travel to our doc have run out. Our most profoundly affected child (15) has continued to be super irritable and moody. She has been officially diagnosed with bipolar, asperger's (asd) conduct disorder at best, borderline personality disorder at worst. She has been out of the psychiatric hospital for 2 days, and as if that wasn't enough, my ds11 has now been in a flare for at least 2 months with 4 weeks
  2. So my diagnosis is autoimmune encephalitis. I was only approved for 5 months of ivig then I lose my insurance because of my age. It's been 5 months and it hasn't helped. It did help the dysautonomia which is believe to be autoimmune but that's about it. My bladder, ocd, and fatigue continue to get worse and I am getting more disabled and frustrated. The only people who will see me locally about ocd are psychiatrists, I recently saw one and he dismissed all my diseases and treated me like a healthy person. His plan was to put me in psychiatric inpatient, detox me off all my sleep medications be
  3. The AE alliance has created a search page to locate a physician. The search can be filtered, based on specific diagnosis or even antibody-negative AE~~~ something it really seems like some of most severely affected children/adults on this forum may have. You can even filter by adult or child patient. Maybe this will help someone find a new place to get help for their loved one (or themselves!) https://aealliance.org/ae-clinicians-network-new-resource/
  4. So over the past couple of months we worked really hard and ivig was approved for the diagnosis of autoimmune encephalitis. I had to go back up to NYU for a week inpatient, and it was the hardest thing I've EVER DONE because of how sick I am, how bad my bladder is, and how bad the ocd is. I came home expecting to get back to ivig but there is a HUGE HICCUP. I am only approved for ivig at one of the local hospitals (the main one where my mom works) but we cannot find a doctor to manage and oversee treatment and any potential side effects, even though I tolerated ivig better than any medication
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