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  • 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
    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.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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    • #3
      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.
      sigpic

      Stay safe my son. See you around thanksgiving!

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      • #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.

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        • #5
          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
          Mom to Heather, age 16, T-12, 8 years post & Michael, age 19.

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          • #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.

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            • #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

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              • #8
                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!!
                Mom to Heather, age 16, T-12, 8 years post & Michael, age 19.

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                • #9
                  Hyperbaric Oxygen Therapy

                  Have you tried this www.hbomedtoday.com or www.hbot4u.com . 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.

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                  • #10
                    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


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

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                    • #11
                      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

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                      • #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.

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                        • #13
                          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

                          Comment


                          • #14
                            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.

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                            • #15
                              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

                              Comment

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