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Thread: Children with SCI

  1. #11
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by soimumireland
    One issue is what do they do in PE - he really gets frustrated when he can't join in. Any suggestions
    When I was 13 and paralyzed, the kids and gym teacher would pile up a bunch of gymnastic mats to my wheelchair height. I would transfer to it and do pushups, stretches.

    I could join in on the volleyball. I could shoot basketballs. I could run the track .. the coach just kept a different time for me in my chair.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #12
    Soimumireland,
    Can you give us an idea of what sort of activities they are doing in his physical ed. class? I am sure we can think of adaptations and you can talk to the teacher. It may just be a lack of knowledge or ideas on the school's part. I am finishing my last year to earn my degree as an elem. teacher so I have many books with adaptations and would be more than willing to look them up for you.

  3. #13
    Quote Originally Posted by Snowman
    We do not use HOT at Project Walk. We do however have experience working with children with SCI.

    http://www.projectwalk.org/pw_progra...enWithSCI.html
    Sorry if I was miss leading but your website references Hyperbaric Chamber under Phase 1 as an aadditional help in the road to recovery.
    http://www.projectwalk.org/pw_progra...nd2_intro.html

  4. #14
    Quote Originally Posted by Karla523
    Soimumireland,
    Can you give us an idea of what sort of activities they are doing in his physical ed. class? I am sure we can think of adaptations and you can talk to the teacher. It may just be a lack of knowledge or ideas on the school's part. I am finishing my last year to earn my degree as an elem. teacher so I have many books with adaptations and would be more than willing to look them up for you.
    They are aged 4- 5 so doing games like "stuck in the mud", "Ship, sea shore". I suggested that his SNA "Special Needs Assistant" maybe push him for any of those type of games, so as to give him the speed.

    Or divide the class into 2. One group do an activity while sitting on chairs ie Donkey.

    I was thinking of buying a wheelchair on ebay which other kids could take turns of during PE.

  5. #15
    Quote Originally Posted by soimumireland
    Sorry if I was miss leading but your website references Hyperbaric Chamber under Phase 1 as an aadditional help in the road to recovery.
    http://www.projectwalk.org/pw_progra...nd2_intro.html

    Those additional modalities are activities we believe are helpful to recovery but are not offered in our facility (except accupuncture).


    Eric Harness, CSCS
    Founder/President
    Neuro Ex, Inc
    Adaptive Performance and Neuro Recovery

  6. #16
    Soimumireland,
    I am not familiar with the games you mentioned, but if they involve running around then yes, it would be an excellent idea to have an assistant race him around in his chair, if he can't do that himself. I think you are on to a great idea with purchasing a cheap chair for the PE class. The kids can do relay races, etc. that your son can participate in. It should also be a boost to his self esteem since he will be "better" at wheeling than his classmates Always a bonus lol. There are many games they can play with balls in which he should be able to throw/catch since he has use of his upper body. If he was a little older, I might suggest having classmates assist him during PE, but at his age I would be afraid they might push the chair over. You sound like you are on the right track, though. You might have to be the one to give them suggestions, but who really cares as long as he gets what he needs. Let us know if you do purchase the extra chair. I would love to hear how it turns out. That is such a good idea, I might even do it in my own classroom when I have one next year!!

  7. #17

    Pediatric Lokomat

    Might be of interest


    PEDIATRIC LOKOMAT®: INTENSIVE LOCOMOTION THERAPY FOR CHILDREN
    In November 2005, the first Pediatric Lokomat® worldwide was installed at the Rehabilitation Center in Affoltern which is part of the University Children’s Hospital of Zurich in Switzerland. With the introduction of the Pediatric Lokomat®, intensive locomotion training is now also available for small children with cerebral palsy or other neurological disorders such as stroke, spinal cord injuries and traumatic brain injury.




    REHABILITATION CENTER
    for children and young people


    Mill mountain route 104
    8910 Affoltern at the Albis
    Tel. +41 (0)44 762 51 11
    Fax +41 (0)44 762 51 22

    E-Mail: rehab@kispi.unizh.ch

    Internet:
    Rehabilitationszentrum Affoltern am Albis


  8. #18

    scoliosis in SCI kids - starting 2013 with hope

    We are just back from our 3rd trip to Shriner Hospital in Philly. last year Dr Betz had suggested VBT (Vertebral Body Tethering) as Sean's spinal curve was at 40 degrees and his only other option is to have a spinal fusion - hip to T3.

    We checked out VBT with our doctor's in Ireland, they had no experience of the procedure and are very skeptical. They did agreed that Dr Betz and Shriners was the best place but would not recommend such a new / unproven procedure. However, as a fusion would remove all of Sean's flexbility they could understand why we would consider VBT.

    Anyway Last week Sean's xray showed a curve reduced to 35 degress (don't know how) and Dr Betz believes that his tightening hips and pelvis alignment are effecting the curve. He recommends releasing the tendons and hopefully if that works we will not need any spinal surgery. If it doesn't VBT is still an option.

    In Ireland we had only one option do nothing until he had detoriated so bad that a spinal fusion would be a blessing. Thankfully Dr Betz adapts his treatment plan to suit to suit the patient and getting them the best option

  9. #19
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    Quote Originally Posted by soimumireland View Post
    We are just back from our 3rd trip to Shriner Hospital in Philly. last year Dr Betz had suggested VBT (Vertebral Body Tethering) as Sean's spinal curve was at 40 degrees and his only other option is to have a spinal fusion - hip to T3.

    We checked out VBT with our doctor's in Ireland, they had no experience of the procedure and are very skeptical. They did agreed that Dr Betz and Shriners was the best place but would not recommend such a new / unproven procedure. However, as a fusion would remove all of Sean's flexbility they could understand why we would consider VBT.

    Anyway Last week Sean's xray showed a curve reduced to 35 degress (don't know how) and Dr Betz believes that his tightening hips and pelvis alignment are effecting the curve. He recommends releasing the tendons and hopefully if that works we will not need any spinal surgery. If it doesn't VBT is still an option.

    In Ireland we had only one option do nothing until he had detoriated so bad that a spinal fusion would be a blessing. Thankfully Dr Betz adapts his treatment plan to suit to suit the patient and getting them the best option
    have you tried a medical pilates table? these are great for stretching and would help loosen the hips. i'd try that or accupuncture before considering surgery.
    "Smells like death in a bucket of chicken!"
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  10. #20
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    Quote Originally Posted by soimumireland View Post
    We are just back from our 3rd trip to Shriner Hospital in Philly. last year Dr Betz had suggested VBT (Vertebral Body Tethering) as Sean's spinal curve was at 40 degrees and his only other option is to have a spinal fusion - hip to T3.

    We checked out VBT with our doctor's in Ireland, they had no experience of the procedure and are very skeptical. They did agreed that Dr Betz and Shriners was the best place but would not recommend such a new / unproven procedure. However, as a fusion would remove all of Sean's flexbility they could understand why we would consider VBT.

    Anyway Last week Sean's xray showed a curve reduced to 35 degress (don't know how) and Dr Betz believes that his tightening hips and pelvis alignment are effecting the curve. He recommends releasing the tendons and hopefully if that works we will not need any spinal surgery. If it doesn't VBT is still an option.

    In Ireland we had only one option do nothing until he had detoriated so bad that a spinal fusion would be a blessing. Thankfully Dr Betz adapts his treatment plan to suit to suit the patient and getting them the best option
    Wow, thanks for posting this. It is good to see a potential alternative to fusion (which we are desperately trying to avoid with my son for the reason you give above, plus our "fear" of surgery due to the outcome from his previous surgery). Just a shame VBT still involves surgery....

    I see that it is recommended for children less than 10 years old (presumably because most growth occurs before the age of 10, so the technique will have less benefits thereafter?). My son will be 10 in July....

    FYI our sons X-ray angle measurements tend to vary, not necessarily logically. He does get acupuncture, chiropractor, and Project Walk-type exercises (so similar to crypticgimp's suggestions). Combine that with the variances in the x-ray set-up and I'm not surprised that the end measurements don't always seem to add up.

    When we were in Baltimore last year (Johns Hopkins, for radiotherapy of that remaining b@stard of a tumour), we took the opportunity to see a spine specialist, who said that as long as my sons spine remains as flexible as it is, then he would delay any recommendation for fusion (but fusion was the only option presented, with the view that it will be required at some point). So the acupuncture etc will be continuing!

    Given how near Baltimore is to Philadelphia I wish we'd taken the opportunity to visit Shriners there, but I guess we were a bit busy worrying about the radiotherapy to think about too many other things at the time....
    Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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