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Thread: Children with SCI

  1. #1

    Children with SCI

    I have a 4yr old son with a SCI since Feb06 and I want to hear from other people who have children with SCI and any advice they can give me. Also if anyone has an EasyStand Magician Stander which their child has outgrown / not using.

  2. #2
    You might want to post under the Caregiver forum as I know we have a number of other parents who have children with SCI/D.

    You can also post a want ad for the equipment you are looking for on the Exchange Equipment and Services forum.


  3. #3
    Senior Member Robynbird569's Avatar
    Join Date
    Jan 2006
    Lake Isabella Mi
    Soimum, I have a daughter that is 7 and has been injured since July 02. I will be more than glad to answer anything you need answers to. Even tho shes been injured now for 4 years I too still run into problems. This is a good place to get help from. But feel free to pm me and I will see what I can do to help you.

    Stay safe my son. See you around thanksgiving!

  4. #4
    People keep telling me that because my son is so young he has a better chance of recovering. I have been lurking on this site to see if there is anywhere we could go or anything we could do to get something back. Do children recover much over time or is it the same with 6 months being the key time but some hope for 2 years.

  5. #5
    Senior Member LauraD's Avatar
    Join Date
    Jan 2002
    Southwest WI USA
    Hi!! My daughter, Heather, is a 14 year old, T-12, 6 years post. She was injured in a car accident when she was 9 years old. Heather didn't regain much of anything, only her muscle on the top of each leg which has led to hip flexion contractures because she can lift her legs up but not push them back down. She does this alot when she sleeps and doesn't realize it, so her legs don't straighten all the way any more. I remember being told that children are resilient though and adjust easier than adults. Heather still does most of the things she did before, ride a horse, 4 wheeling and she can even bounce on the trampoline by sitting and making her arms do circles. She still has days though that aren't so easy but as she says, "who doesn't". If I can help you out in any other way, let me know.

    Mom to Heather, age 14, T-12, 6 years post & Michael, 16

  6. #6
    Thks LauraD

    Was Heather able to crawl and also did she regain any bladder control. Sean voids himself but does not fully empty his bladder. I am not sure if he can feel when he needs to go. It is not that long since he was toilet trained and being in a nappy is easier than going to the toilet. He has told me on occassion that a wee was coming but the nurses reckion that is because he had an UTI and it is the stinging which lets him know when it is coming.

    What other therapies have you tried my big hope at the moment is a FES bike.

  7. #7
    Coping with School. Sean just started junior infants last week and taken to it like a duck to water. The school and his teacher have been great but they have no experience dealing with a child with Sean injuries. He has no fear and loves speeding and pulling skids in his wheelchair. As the only kid in the school in a wheelchair he is a novelty and with kids wanting to push him. One issue is what do they do in PE - he really gets frustrated when he can't join in. Any suggestions

  8. #8
    Senior Member LauraD's Avatar
    Join Date
    Jan 2002
    Southwest WI USA
    Heather can get herself up on her hands and knees but crawling takes a lot of energy and then she can't keep herself up for very long. She did not regain any bowel or bladder function. She did have a mitrofanoff in 2001 and bladder augmention in 2005 as she had no bladder capacity. When her bladder is full her back hurts and she knows its time to cath. We only did a year and a half of outpatient rehab plus a 2 week stay at Shriner's in Chicago. Other than that it is stretching at home and the stander (when she is not fighting it). She is a very stubborn girl and sometimes when she decides she is not going to do something it's her way or no way. Teenagers!!

  9. #9
    Hyperbaric Oxygen Therapy

    Have you tried this or . I have just found a clinic in Dublin and have checked out the Project Walk website and they use HOT in their treatment as well as accupuncture.

    Brought Sean today - he was too scared to put on the mask we tried every thing - even "lets make Dart Vader voices" - no luck - 4 year olds!! We are going back tomorrow to try a different delivery method. If we have any results I will let you know.

    We are still awaiting a stander (only waiting 15 weeks) but I got some full leg splints and we have managed to get him to stand for at least 15 minutes a day for the last month. He seems to be getting some recovery in his motor and sensory in his legs but I am alway fearful of the "its only a reflex" response.

  10. #10
    We do not use HOT at Project Walk. We do however have experience working with children with SCI.

    Eric Harness, CSCS
    Neuro Ex, Inc
    Adaptive Performance and Neuro Recovery

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