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3 year old with c2 partialy severed spinal cord

allysajo
0 Recommendations

This has recently happened and we unaware of her outcome, any help???

http://www.caringbridge.org/visit/allysa

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Exercise Dehydration Paralysis

11 replies

FuschiaFan

We need more information. Are you family members or friends? Where is she? How recent? How much paralysis does she have? What is her actual neurologic level of injury and degree of completeness of her injury (usually described as an ASIA score)? Is she dependent on a ventilator? Did she get methylprednisilone immediately after the injury?

allysajo

I am her aunt. She is in the childrens hospital of michigan. This happened 3-25-08. They say her spinal cord is severed partially at c2. she is not moving anything but her head and is on a ventilator. Not sure about the asia score or the meth. They just put a halo on her yesterday to let her c4 & c5 fuse back on its own. Both her legs are broke too.

Farfalla

What happened to her to sustain such injuries?

allysajo

head on collision car wreck.

FuschiaFan

I would recommend getting in touch with Shriner's Hospital for Children in Chicago IMMEDIATELY. She should go to a specialty SCI rehabilitation program and this is one of the best in the world and if cost is an issue the care is free. I believe they do have a vent program. Speak to them directly, and also to the social worker or discharge planner at the hospital where she is now.

It is too early to say how much impairment she will have ultimately, but it is important to plan for the worse (no return) but hope for the best (getting something back).

Eileen3

I am so sorry that this has happened. You definitely need to keep an eye on her skin to make sure that she is being turned often enough to prevent pressure sores. The recommendation to get in touch with Shriner's is the best one. She really needs to be at a place that understands spinal cord injury and also how to hopefully, in time, wean her from the vent. It is way too early to know about what she might recover, but there is about a two year span post-injury where she could recover a great deal of both motion and sensation.

BizzyB

The move to a hospital that specializes in child neurological damage is absolutely the best idea. The sooner the better.

audreys

Yes! Contact Shriner's. Because they have specialized SCI hospitals they can give you advice that the other hospitals don't even know about. I really feel that they saved my son's life with their respiratory, nutritional, and other advice. Shriner's also will follow up with your niece until she is grown. Another great suggestion is Kennedy-Kreiger in Baltimore. Dr. John McDonald is there. We wish that we had taken our son there immediately after the tumor was removed. They like to get children with new injuries, but also do a lot of work with chronic SCIs. The one problem there is that you need to have private insurance or pay. Whatever you do, don't let them send your niece to a pediatric rehabilitation facility that rehabs all types of problems. She needs to go to one that treats SCI.s Good Luck and God Bless.

Theresar360

I have a similiar situation going on in our family right now. My now 23 month old grand daughter was injured in a MVA on Dec. 5, 2007. She also broke C 4,5 and 6 and has a complete transection of her spinal cord. She is totally paralyzed from her neck down and ventilator dependent. She just came home from the hospital March 31 but has returned twice due to a lung infection. She is coming home tonight hopefully she will be able to recover and stay home.
This really struck home with me. I thought when we were facing the horrible truth that we were the only ones in the world that this could possibly have happened to. Obviously, this is not true. How horrible that such young and beautiful little girls can have such devastating things happen to them. My grand daughter also has a caringbridge site. If you would like to visit it is at caringbridge.org in the search box type victoriacardenas if you need the password it is victoria. It is almost uncanny when I saw the resemblence between these two.
Thanks for listening it feels good at times to just let it out......Theresa Kauffmann

bucklestwins

For both Allysa and Victoria, we are so very sorry about their injuries. I whole-heartedly agree that they both need to be taken to a specialty hospital dealing specifically with pediatric SCI. My daughter, who is now 4, sustained an injury to her spinal cord when she was just 4 months old. It is from T3-T7. We have been taking her to Kennedy Krieger Institute in Baltimore for almost 2 years now, and we have been absolutely blessed to be there. They have the most wonderful program for children, and they treat very aggressively in order to get the most return of function possible. They do have a vent program, and they work very hard to get everyone off the vent if at all possible. The physical and occupational therapists are absolutely top-notch. Even after almost 4 years, we are still seeing function returning. Please contact me if you have any questions or need information about the program. I know you are tired of hospitals, but it is imperative that you get these little girls into a program that will help them progress. Sometimes it seems completely overwhelming, but you will all get through this, and these two little girls will show you how strong and determined they can be.

Let me know if we can help. Good luck!!

audreys

I am so sorry about your granddaughter. We have been there, done that...i.e. our seven year old son became a C6/7 quad three years ago due to a tumor.
What really struck home about your posting was Victoria's respiratory troubles. Lucas was also vented, and almost didn't make it through his first winter at home due to his respiratory infections. In fact, he spent most of the winter in the P.I.C.U. at Yale-New Haven Hospital. With all their knowledge no one was able to tell us a better way to care for Lucas so he would stop having the lung issues. We finally found Shriner's S.C.I. Hospital. They probably saved Lucas' life. They told us several things that now seem self-evident, but didn't at the time. First, they started him using a cough-a-lator. Wehad been using a chest vest, manual therapy and an accapella, but the cough-a-lator really helped a lot more. Secondly, he needed better nutrition. We had to have a G-tube inserted, and he finally started gaining back some of his weight. The MOST INPORTANT THING WE LEARNED, was hydration. We found that he was not taking in nearly enough fluid. In fact, he was living in a state of dehydration. Shriners told us eactly how much fluid he needed per day, and we still make sure he gets it. For a few weeks after we started the greater fluid intake, we suctioned huge plugs out of his lungs, much larger than ever before. These were the things that kept getting infected.
I hope that this will help in a little way. The Shriners S.C.I. hospitals are in Philadelphia, Chicago, and in Sacremento. There is no charge. They will even help you get her there, if needed.
I also wanted to add my comments to "Buckletwins" about Kennedy-Kreiger. I was unaware that they worked with vents, because Lucas was off the vent when he went there, but they are also wonderful.. Lucas has benefited greatly from the exercise programs they devised for him there.
Finally,There is hope. I believe that with my whole heart. At Shriner's they say to "keep your child well until the cure comes." Our children are blessed to live in a time when the cure is coming.

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