6th in the World

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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  • That's heartbreaking to read!

    Can't imagine what you are going through. Would be interesting to understand and hear some shrink claim there's an underlying reasoning or choice to be this way!

    Really hope and pray you find answers ....

  • I'd love to hear anyone tell me she's malingering or volitional. Especially for a 12 year old that has experienced no trauma except actual concussions as the trauma. Believe me GlasgowAndy, I'm looking for the right doctor for help now.

  • Yeah I can understand what your saying.

    Wish there was a community of doctors who could help! I guess when fear is there from a medical perspective they can be reluctant to do anything. It's hard when it's just humans with our lives in their hands

  • Hi. I would suggest you join our Facebook support group by going to fndhope.org. and clicking on the "join" button on the main page.

    We have quite a few younger (all too many) members and their parents around the world and will find support and help there.

    It sounds like you have managed plenty of therapies for her, but there are perhaps other avenues to explore also.

    Best wishes, Duncan

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