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Thread: 6 years-old - T8 - anything we can do?

  1. #1
    Junior Member Hope2004's Avatar
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    6 years-old - T8 - anything we can do?

    Dear Dr. Young and all,
    I'm new here. This is my first post. I'm a 6 yr-old boy's mom. On 15 Feb this year, our van was hit by a car from the other side. The terrible accident left my lovely son paraplegic - T8-T10 SCI, no movement / no sensation / no control of bladder and bowel below the injuried level.

    We stayed in hospital for a month and in Rehab for 4 months. It seems the doctors can do nothing. I learned that the first year is very crucial for some recovery But we can see any improvement yet.

    I am desperate to look for some treament for him. Is there something suitable for a kid? (I know mostly for adults.) Even the FES bike, there is no suitable size for him. Pls advise me what I should do for him.

    Thanks a million!

    Hope

  2. #2
    Hope 2004,

    There are many things that can and must be done. First and foremost, he must learn to take care of his body including bladder, bowel, and skin. Second, there are numerous devices for standing that are built for kids. Third, I recommend swimming. This is something that kids enjoy and will allow him to stand and exercise with a minimum of fuss and expense.

    Please understand that there are many scientists working of therapies to restore therapies. I believe that some of the therapies that have been shown to restore function in animals will be going into clinical trial. So, it is important that your son maintain his body.

    Wise.

  3. #3
    Junior Member Hope2004's Avatar
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    Dr. Young, Thanks for your quick response!

    For bladder, his capacity is 150cc. He's on Ditropan(3cc/8AM-3cc/2PM-5cc/8PM),Cath every 3hours (6 times/day). no infection.

    For Bowel, he's on Senokot 5cc/8AM and Lactulose 5cc/8PM, BM on commode daily, suppository used as required.

    No skin breakdown.

    Standing 1 hour daily. (His legs looks slim.)

    Swimming in lifejacket 3 times each week. Pls advise me how he stand in water as you said?

    That's all. Are they enough for him to maintain his body to wait the research implemented? Which one should he wait for? when? Thanks!

    Hope

  4. #4
    Hope 2004,

    Please know I am thinking of you and your son. Keep exercising his legs as much as possible - there will be a cure someday soon. If you need to talk drop me an email.

    Deb

  5. #5
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    Hope 2004,

    My son was injured two years ago. He is now 11. We have been doing aqua therapy which is working great for trunk control. Go to Wal-mart and buy 2 pound ankle weights. That will weigh his legs down in the pool for standing and weight bearing. That works good for him.

  6. #6
    Senior Member Belle's Avatar
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    If you weight his feet, don't forget to get aqua shoes if you don't have them already. Don't want to scrape up his feet on the bottom.

    It's too bad you can't get him an FES bike, but there are also hand-held e-stim devices that, while not having a functional component, can also help stimulate the muscles.

    *************
    AB wife of T8 complete para

  7. #7
    Junior Member Hope2004's Avatar
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    thanks all of your kind replies.

    hi, mom#1, i am wondering how did you do aqua therapy for your son, do you have PT/OT or aqua instructor?

    i bring him to swimming pool and he could swim 400 - 500 meters every time around 1 hour, so if i let him wear aqua shoes and ankle weight (and let him stand on the pool, i think), then what else i would do for his aqua thrapy? coz he would feel boring soon. thanks very much.

    Hope

  8. #8
    Junior Member Hope2004's Avatar
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    thanks, Belle.

    we'll look for aqua shoes for him, and would you please give us some details for hand-held e-stim devices, we might could start to look for it as well, thanks in advance.

    Hope

  9. #9
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    Hello Hope and Welcome to Carecure,

    I am the mother of a five-year-old; My daughter Emma suffered from a spontaneous epidural hematoma (an unexplained bleed that clotted and compressed her cord)on 11/7/02. She is a T3 complete. I don't know what your resources are, but there are several places in the U.S. that offer more intense rehab for pediatrics. Emma is followed by Dr. Betz and the SCI unit at Shriners Hospital in Philadelphia and Dr. Ruvinskaya at Wahington University's Center for Rehab in St. Louis. Shriners does not bill for their care and Dr. Betz is so very kind and optimistic. Emma does a home-based rehab program that includes gait training with RGO braces, suspended gait training on a treadmill, electrical stimulation on her legs, aqua therapy and passive range of motion cycling. She also has standing time daily in a stander and receives traditional PT 2 days a week at school. The teams in Philadelphia and St.Louis are doing a collaborative study with pediatric FES bikes. Please email me directly if you would like more information. Best,
    Ali

  10. #10
    there is nothing that can be done

    I've done this for 22 years waiting for a cure - it' false hope IMO

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