19 Year Old Nephew C6 C7 Complete

[AuntLore]

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.

[darkeyed_daisy]

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.

[betheny]

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.

[mom277]

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.

[AuntLore]

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.

[AuntLore]

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

[nide44]

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

[AuntLore]

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.

[betheny]

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

Sure, no problem.

[AuntLore]

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.

[nide44]

AuntLore,
I've seen that Magee in Phila. is supposed to be
one of the Hospitals that's rated as tops in the
SCI field. When we were looking for treatment for my son,
that was the first on my list as somewhere to investigate.
As it turned out, his mother had a large say about him not being moved too far from home, and the circumstances of his transfer were determined in a matter of hours.
We really were in a whirlwind and the Shock Trauma center just whisked him off to thier 'sister center' closeby.
Fortunately it is a decent SCI center, and has a good reputation. In hindsight, I think that we were given the 'bum's rush' out of there (Shock Trauma) and really had no time to try to make an alternate decision. Once there, it was decided to keep him there. I'm not sure we were allowed to make the very best decision, but he demanded to be close to his young son- so we 'let it ride'. The almost daily visits with his son has done wonders for his emotional state. He was "Mr. Mom", and was his daily caregiver before the accident. These visitations would not have been possible or practical, elsewhere.

[teach1]

I am sorry to hear about another SCI. It has been over 7 months for my son and I am still learning. He was 20 yrs. old when he had an ATV accident that left him injured at T8. I have heard wonderful things about Shepherd in Atlanta. In fact, I have contacted them about their Beyond Therapy program. I have read many books that I found on the Christopher Reeve website. I ordered them and they have helped me to understand a lot of about SCI. Hopefully, a cure is soon and I really feel encouraged about what is happening with the research at this time.

[borries]

keep faith

Hi there,

So sorry about the injury. My brother suffered the same injure 4 weeks ago yesterday. He is struggling very much with his lungs it seems that your nephew is doing much better with regards to that, hope it stays so. This is a rollercoaster from hell with the smallest things that becomes a high and a lot of setbacks that makes it difficult to keep faith. My prayers are with all people that suffer from these injuries and may your prayers for recovery come true.

Best Wishes

[cheesecake]

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.

I would strongly urge you to consider Shepherd. You won't look back or regret it. I have assisted a number of families who have gone there and each has been pleased with the care as well as patient education.

[AuntLore]

Shepherd is definitely being considered (it's probably the top choice right now). We have heard wonderful things about it. I lived in Atlanta for 17 years, having moved to S. Florida 12 years ago, so we are very familiar with the area. My cousin used to work at Shepherd also.

My sister has 5 children, Nick is the second oldest, the youngest is 8. I was wondering how long away from home they might have to be with Nick's initial treatment? Should both parents be with Nick at all times? We need to begin making arrangements for the other children if they move him to anywhere other than Jackson in Miami. However, the only consideration is what is best for Nick.

It is as if we've joined a club that we didn't know existed, and I'm very grateful for a chance to ask these questions.