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Thread: 6 years old seeks your advice from Naples Italy

  1. #1

    6 years old seeks your advice from Naples Italy

    My 6 year old son got injured in a car accident on July 15 (regularly wearing seatbelts, even if the lombar type, that idiotly I reputed safe since used on airplanes. The other 2 sons wearing normal seatbelt came out relatively safe from the crash).
    From the MRI emerged a C/6-C/7 injury.
    He is in rehab in Rome since August 11th. Sensory Evocked potentials were almost normal in August and non existant last week. Although the injury is at the above level, he can move arms and hands normally and seems to have control of higher abdominal muscles.
    One doctor defined him T2 and another T5.
    Since the accident there's no motory progress of his legs. No movement, no sensation, so pain, save for the first 2 or 3 weeks (occasional pain at the fingers of the feet).
    Since a couple of weeks he seems to feel the need to urinate. When he tells us so, 7-8 times out of 10 he indeed urinates, although he doesnt feel it. Yesterday he told us he needed to defecate because he felt pain in his buttocks, and indeed defecated, even if aided by pressure applied on the stomach.
    As you can imagine my wife and I (and the older 8 years old brother) are desperate. We think that rehab here is just teaching him to use the wheelchair. As soon as we arrived, less than one month after the crash, they told us our son would have a normal life on a whhelchair. They do not consider legs at all in rehab. Just some passive moving, and than exercises for the upper part of the body.
    My wife and I are thinking of moving him to Insubruck Center, hoping the will be more active in getting care of the legs also. I have read much on the activity based rehabilitation, and we want to give it a try. Does any one have suggestions? I emailed Wise Young long ago but he never replied. Do we have to resignate after less than 2 months from the trauma? Can activity based programs or stimulation of the legs repristinate transmission to the legs? How come that my son moves more than what he should? Does signal pass over the injury point? Would you wait some or try immediately stem cells transplant or some alternative terapy? What do you think of Giselher Schalow program?.
    Thanks to anyone will help.
    Tommaso
    Last edited by TommasoSr; 09-14-2006 at 04:34 PM.

  2. #2
    With movement being present this soon after the injury, there is indeed promise of recovery, but if he doesn't have enough strengh to walk right now, it's best that he learn to use a chair. I know it doesn't feel like it right now, but his chances for a significant recovery and a full life are very good. In the United States we have accreditation procedures for rehabilitation facilities. You need to explore if there is something similar in Europe, check in to the qualifications of the physicians and facilities that you are using and move your son to more qualified care if it exists.

    Other people will be responding to your post soon. You will have loads of support over the internet. There are people in Europe in our community and they may be able to make helpful suggestions.

    Incidentally, his level may in fact be changing from day to day as he recovers so don't be alarmed when the doctors have differing labels. If anything that's a good sign.

    I'm sorry for all the suffering you and your family are enduring. We're holding you in our hearts.

    RAB

  3. #3
    Thanks SCI nurse.
    Unfortunately, reading it over, I made a mistake in my first posting, writing my son moves legs and hands. He moves ARMS and hands. HE DOES NOT move LEGS at all, exept for reflexes.
    Sorry for the miswriting, stress is building on me. I just edited the post so others will read the correct facts
    Last edited by TommasoSr; 09-14-2006 at 04:35 PM.

  4. #4
    I am so sorry to hear about your son's injury. You and your family are in my prayers. I hope our European CareCurers will be replying to your post.
    Daniel

  5. #5
    Tomorrow at 4 pm two months will be passed since I had that stupid and tragic car accident in which Francesco, my 6years old son, got a C6/7 SPI. Since then, the whole world collapsed on me. A funny, dynamic and smart child was suddenly thrown into a world of sufferance and despair. Today he took the fist tour into a wheelchair. I forced a smile, but then had to run away crying. He is into rehab in a place near Rome, been here for a month, but as soon as we arrived they told us our son would never walk. We didn’t and don’t accept it, even if we realize that every day without enhancements is a piece of hope that gets down the sink.
    We read around – mainly here – that activity based programs (FES, treadmill, etc) could be useful both for preventing no use learning by cord cells and to reestabilish some motory function. The problem is will Francesco at his age be able to follow an intensive training program? Do we have the right to force him thru this.? Here in Rome rehab is just one hour and a half per day, most of it playing, and its directed only to the upper part of the body; the legs are just stretched 10 minutes a day (save for the passive movements me and my wife have him make in the afternoon).
    Does anybody have experiences of harder regimes for young children?
    Does anybody know if famed Hoch Zirl clinic in Innsbruck does use FES and other activity based based programs ?
    Thanks to everybody. Just reading you is great support.
    Last edited by TommasoSr; 09-14-2006 at 04:32 PM.

  6. #6
    Hi TommasoSR

    I echo your pain and frustration. My 4 yr old son was in an RTA in Feb 06 and is T12 incomplete. His rehab seems to be to get use to life in a wheelchair or at least wait until his arms get longer and they can do more stuff.

    Don't give up my son has regained his hip flectors and adbuctors and there seems to be more sensation coming back in the last week.

    We are trying laser accupuncture here but check out Cindy Kay's post for info on clinic in France where I know an number of child SCI from Ireland have gone but with mixed results.

    I am looking at Hyperbaric Oxygen Therapy www.hbomedtoday.com and www.hbot4u.com and also think that a FES bike might be a good investment. Have started saving.

    Kids seems to take to rehab much better and don't have the same fear as adults so an intensive training program might seem like fun to him. Sean spends alot of time on the floor and this I belive is a great phyiso workout as it places demands on dormant muscles.

    PM me if I can be of any help. From what I have read SCI with high injuries have a good chance of walking and I have met people with high injuries who have walked.

  7. #7
    Quote Originally Posted by TommasoSr
    My 6 year old son got injured in a car accident on July 15 (regularly wearing seatbelts, even if the lombar type, that idiotly I reputed safe since used on airplanes. The other 2 sons wearing normal seatbelt came out relatively safe from the crash).
    From the MRI emerged a C/6-C/7 injury.
    He is in rehab in Rome since August 11th. Sensory Evocked potentials were almost normal in August and non existant last week. Although the injury is at the above level, he can move arms and hands normally and seems to have control of higher abdominal muscles.
    One doctor defined him T2 and another T5.
    Since the accident there's no motory progress of his legs. No movement, no sensation, so pain, save for the first 2 or 3 weeks (occasional pain at the fingers of the feet).
    Since a couple of weeks he seems to feel the need to urinate. When he tells us so, 7-8 times out of 10 he indeed urinates, although he doesnt feel it. Yesterday he told us he needed to defecate because he felt pain in his buttocks, and indeed defecated, even if aided by pressure applied on the stomach.
    As you can imagine my wife and I (and the older 8 years old brother) are desperate. We think that rehab here is just teaching him to use the wheelchair. As soon as we arrived, less than one month after the crash, they told us our son would have a normal life on a whhelchair. They do not consider legs at all in rehab. Just some passive moving, and than exercises for the upper part of the body.
    My wife and I are thinking of moving him to Insubruck Center, hoping the will be more active in getting care of the legs also. I have read much on the activity based rehabilitation, and we want to give it a try. Does any one have suggestions? I emailed Wise Young long ago but he never replied. Do we have to resignate after less than 2 months from the trauma? Can activity based programs or stimulation of the legs repristinate transmission to the legs? How come that my son moves more than what he should? Does signal pass over the injury point? Would you wait some or try immediately stem cells transplant or some alternative terapy? What do you think of Giselher Schalow program?.
    Thanks to anyone will help.
    Tommaso
    Dear Tommaso,

    I am sorry to hear about your son. Your description suggests strongly to me that your son will recover substantially. Here is what I find hopeful,
    1. He has quite a lot of function below his injury level, even though you suggest that he does not have feeling below his waist.
    2. The fact that his somatosensory evoked potentials were good in August is also a good sign.
    3. His report that he can feel the need to urinate and defecate are hopeful signs.
    4. You say that he has reflexes in his legs. That is good.

    He is still relatively early after injury. This means that he has a lot of recovery ahead of him. A good rehabilitation center is important. The Innsbruck group is good. If you are in Vienna, you might try to see Dr. Milan Dimitrijevic who is sometimes there; I have great respect for him. I know Dr. Schalow and think highly of his program. In the United States, I recommend the Shriner's Hospital in Philadelphia.

    The pattern of his symptoms, as you describe them to me, suggests to me that he may have two injuries, one in his cervical region and the other in his lumbar area (perhaps responsible for some of his symptoms). Have they done an MRI of his lower spine? There is one study by Milan Dimitrijevic from the 1980's suggesting that as many as 15% of people might have an occult injury to the lower spine, masked by an upper injury.


    I am sorry but I have been travelling a lot in China and am not always able to get to my email for a few days at a time. This means that I have fallen behind and am still trying to work through the thousands of emails that I have gotten.

    Wise.
    Last edited by Wise Young; 09-15-2006 at 12:34 PM.

  8. #8
    Tomasso,

    I am so sorry for you and your family. My husband had a C5/C6 complete injury over a year ago.

    Please continue reading the carecure pages and you will find many stories of hope. Your son has had wonderful recovery already and you should feel very encouraged that he has gotten back so much sensation and control already. Good signs! He is so young, and there is so much hope for him. Remember what the others have said, he is just starting out in his recovery. People always say that the most recovery happens in the first 6 months to a year, and some people continue to recover even after that. So it's early days, and there's everything to wish for.

    I understand your grief - everyone will mourn for a long, long time. You will be able to keep that in your heart, though, and put on brave smiles for your son.

    Keep posting here -- there are many members from Europe on the forum and I'm sure they will respond soon.

    -Brighter days

  9. #9
    Tomasso,

    I believe the Kennedy Krieger Institute in Maryland has programs specifically tailored for SCI children. Perhaps you can call them and ask if they are aware of similar programs in Italy?

    http://www.kennedykrieger.org

    Best wishes,
    Brighter Days

  10. #10
    It's still so early, and with many positive signs! Keep your chin up and eyes open, things should continue to get better for some time to come.
    Rick

    GO FORWARD! 2 FIGHT! PARALYSIS!

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