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Thread: 19 Year Old Nephew C6 C7 Complete

  1. #1

    19 Year Old Nephew C6 C7 Complete

    Hello. This is my first time in a chat room.

    My 19 year old nephew severed (90% we are told) his spinal cord on 11/24/06 in a motocross accident between C6 and C7. He has no feeling or movement below his nipples, can breathe on his own (with effort), and can move his arms and thumbs (not fingers). He has two pins surgically placed in his vertabrae for stability.

    I am trying to help my sister and her husband plan the next step. Now that he is stable enough to move, they want to find the best option for him. I see that the ProCord trial is not accepting new patients. Does anyone know if this drug is available? Also, I see that Cethrin has been granted Orphan Drug Status. What does that mean? Is it available?

    I'm pursuing three avenues: Drugs, location for treatment and doctors. If anyone has any suggestions, or answers to my questions, I would be so grateful. They live in Florida, but will travel where ever they need to.

    Thank you.

  2. #2
    Senior Member
    Join Date
    May 2006
    Location
    Somewhere in the Rocky Mountains
    Posts
    8,147
    Welcome to Carecure Auntlore...you came to the right place for your answers. The nurse will answer your technical questions.....I just wanted to say hello and welcome. Good luck to your nephew and even though they have diagnosed him as complete....encourage him to work his hardest as we never really really know for sure in regards to function.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  3. #3
    You're doing well to find us so soon.

    I don't know of any other trials like Procord right now. Hopefully somebody will. I think that one might well have been a good choice.

    Did he suffer any other injuries?

    Time to be looking for a good rehab. Most important right now is to watch his skin, make sure he's being turned every 2 hours, and be looking for a good rehab. I'll post more when I wake up, wanted to keep this bumped up.

  4. #4
    Hello, Aunt. I am happy to hear that your nephew is doing well. We were there when he was injured. My heart goes out to all of you.

    I don't have much to offer (but much hope!) When my son was injured we considered ProCord, but he was not old enough. Someone told us to move him to Shepherd's Center in Atlanta, immediately. It was a very scary time for us, not knowing what to do and afraid of making critical mistakes in his care. We didn't want to be away from home and our support system, but I wonder if we should have at least talked to someone at Shepherd's...

    I'm thinking of you and wishing you strength.
    Last edited by mom277; 12-04-2006 at 01:24 PM.

  5. #5
    Thank you for the replies.

    I was not at the race, but was driving home from visiting family when I got the call. I arrived moments after my sister. He is at Shands in Gainesville, and was racing at Gatorback in the same city. He was airlifted and given stereods by the first responders. His other injuries were minor. Dislocated shoulder and hip and a little road rash. The helmet saved his life. The race had just begun and he was in third place, passing the second place rider who slide under him. They were hidden from view by a mogul from the bulk of the pack which landed on my nephew.

    We are considering Shepherds Spinal Center in Atlanta, Jackson in Miami, Mt. Sinai in NYC, Mayo, Craig in Colorado, and any place else.

    I feel a sense of urgency and, as I'm sure everyone in this situation feels, wanting to do the best possible thing for him.

  6. #6
    Do the rules of the chat room allow me to post a Website set up for info on my nephew?

  7. #7
    Senior Member
    Join Date
    Sep 2006
    Location
    Baltimore MD
    Posts
    167
    Neuro Recovery :

    Magee Rehab Hospital in Phila. Pa.
    Mary R. Schmidt
    mschmidt@mageerehab.org

    Boston Medical Cntr, Boston MA
    Jane Wierbicky
    jane.wierbicky@bmc.org

    Frazier Rehab Institute, Loisville Ky
    Linda Shelburne
    lindashelburne@jhsmh.org

    Kennedy Krieger, JHH - Balto MD
    (pediatric)
    Jody

    Shepard Center,Atlanta GA
    Sarah Morrison
    sarah_morrison@sheperd.org

    TIRR, Houston Tx
    Daniel Graves
    dgraves19@houston.rr.com
    Last edited by nide44; 12-04-2006 at 02:41 PM.
    Bob B
    SCI - Parent

  8. #8
    Bob B

    Thank you so much. I'm emailing a "treatment option" document to my sister now. Perfect timing.

    There is some sad irony in this for our family. In 1957, my father's brother (at exactly the same age as my nephew) was in a car accident causing brain and spinal cord damage -- it affected his speech and walking, completely disabling him. He died this year, after being taken care of for most of his life by my grandmother. This is especially hard on my grandmother because she has lived it, but there were no good options for my uncle in 1957 -- they sent him home to die -- we are so working and praying for a significantly better outcome for Nick.

  9. #9
    Quote Originally Posted by AuntLore
    Do the rules of the chat room allow me to post a Website set up for info on my nephew?
    Sure, no problem.

  10. #10
    A friend of Nick's set up this Website a day or two after the accident. It's been an inspiration to me. www.nickdepalo.com Check it out.

    Nick has a great attitude, and from what I've read in this chat room, that's the most important thing.

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