My 12 year old daughter was just DX'd a month ago with what we have been told as FND with Apnea and Paralysis. She spent 8 days at Hopkins, 5 of them in PICU because of not breathing and on a vent. She would go through episodes of not breathing that led to paralysis and now has limited movement in her legs, limited strength in her arms and limited recall and memory issues. I don't think Hopkins realized that when they disagreed her it would be like this now. When they discharged her, they told us that she is now the 6th documented case in the world of someone that has stopped breathing and has become paralyzed from this disorder. 3 others are here in the States and have Fragile X and 2 are in Japan. Kaeden does not have Fragile X and does not live in Japan. We have no direction. We ping pong off of a Neuro to a Psychiatrist. We are going to see a NeuroPsych in July but other than that, I don't know where to go for help. I do have her in about 10 therapies a week. Ranging from PT, OT, Speech, Equine, and CBT and Play Therapy. I literally went from a healthy amazing normal 12 year old that has High Functioning Aspergers Disorder, 2 concessions, and migraines to a child that has scored at about a 4-5 year old range on OT tests, can't run, can't jump, now rides her horse with assistance and can no longer swim on the swim team that I coach. What just happened? And how did she become such a rarity?
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