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  • scoliosis and in a wheelchair

    Hi
    I am new to the forum and have a daughter with severe scoliosis, lardosis and kyphosis, oh yea she is a quadripelgic and uses a power wheelchair. My question is: Is there anyone else is child in a wheelchair and has to have the insert designed for their curve? My daughter is 12 years old and her curve has changed drastically since she had her chair insert changed. The company we use is National Mobility but I am interested in a new company that deals with scoliosis. Hope someone else has this issue.
    Thank You,
    Lisa.

  • #2
    Hi Lisa,

    What degree are your daughter's curves? Has your daughter ever had surgery for her scoliosis/kyphosis? Is this something that you can consider to help her? I am suprised that she is so young and in a wheelchair due to scoliosis. Was her spinal cord compromised due to the scoliosis? Sorry for all of the questions.

    Sincerely, Connie

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    • #3
      hi Lisa
      My daughter is also quadraplegic (due to cerebral palsy) and in a wheelchair and had surgery for her scoliosis just about 18 months ago when she was seventeen.
      Before surgery she wore a molded corset and hip spica to try to control the curve and enable her to sit in her chair. The base cushion of her seating system was also molded to try to keep her balanced. The back cushion was soft and slightly curved and she had thoracic supports to stop her falling sideways.
      It was monitored constantly as we always had to compromise between keeping her hips even - which unbalanced her shoulders - and keeping her shoulders as even as possible to maximise the function of her right hand so she could drive her power chair and help her head control.
      The customized seating system was produced by Peacocks which is a local orthotics who also constructed her brace, in conjunction with Northumberland Wheelchair Services with a bit of help from the local medical physics department. The whole lot being overseen by her physiotherapist and occupational therapist from her special school.
      I don't know if this will be of any help to you as we are in the UK but it may give you some ideas.
      Best wishes
      Lorrie

      Comment


      • #4
        Hi Connie,
        I should back up Nicole was born premature at 24 weeks gestation. She had a hard time getting off the respirator and had a blood clot in her supervenacava, which has caused other problems. Anyways she went into cardiac arrest at the young age of 7months old, she had a spinal infactment and caused her to be a quad, not a true quad because she can power her own wheelchair. Medically she is pretty complex, but her mental status is a typical 12yr old. SHe has had quite a few back surgeries but the last one caused an infection in her back and the rod had to be removed (she had growing rods placed). She was in the hospital for about 2 months, her back had to heal with a wound vac and later we had to do wound care to her back. I can't evern tell you her degree of her curve because I don't ask anymore. She is not a candidate for surgery because of the clot that has scarred her supervenacava. My husband and I are fine with the decision not to have any surgeries since the risk is to great she will die on the table. She is very happy and has two sisters and is integrated in regular education.
        My question for her chair is she used to curve to the left but since the insert she now curves to the right. I don't know if I mention but she is on continous oxygen, and g-tube dependent. Thank You for answering my message I haven't been in any support group and only have a handful of friends with a special needs child. Someone reccommended this site, I'm so glad I did.
        So I have a question for you, how old was your child when they got diagnonsed with scoliosis?
        Thank You ,
        Lisa, Nicole's mom

        Comment


        • #5
          Hi Lorrie,
          Thanks for the information. Ironically, people look at my daughter who is 12yrs. and they ask if she has CP. I try to give the quick background. The insert sounds like the one Nicole has but I don't think it's their specialty to scoliosis. I wish you and your daughter good luck.
          Thank You,
          Lisa.

          Comment


          • #6
            Hi Lisa,

            I am so sorry to hear what your family has been through. You sound like you are a very strong person. So far, my children have escaped scoliosis. When I was in the hospital for my back surgery in 1978 there was a women in a wheelchair due to scoliosis and my doctor told me that if I was left untreated (right or wrong) that it would likely happen to me. I was diagnosed at a very young age and was watched for years. I was actually "released" at age 12. At age 14 I began having problems and my curvature increased 10 degrees in 6 months to 66 degrees. I have a thoracolumbar curve.

            This is nothing like what your situation is. I hoped to be supportive to you coming onto the site and ask a few questions to understand your situation better. I wish you and your family well and it looks like someone who has a similar situation has responded.

            Connie

            Comment


            • #7
              Hi Lisa,

              I'm a 20yr old female with paralysis (due to spina bifida + other probs) & scoliosis - I use a manual chair. I've was fused at 12yrs from about T1 or T2 to L2 or so, then had the rods extended into my pelvis a couple of yrs later. Due (mostly) to osteoporosis, the pelvic rods have sunk down and pretty much collapsed the bone all around, so now I have a 74* low curve with my ribcage rubbing on my pelvis on one side.

              What type of seat inserts does your daughter have? And do you mean that her curve has changed for the better or worse? I don't think my seating has made my curve worse or better, but, especially the later seating, it has definitely helped with comfort & pain management.

              Since about my 2nd chair (about 6yrs), I've had a foam-on-ply (ie. tailored foam cushioning on stable wood boarding), but got a new chair after my 2nd fusion (I think), I received a "Jay" cushion, which is like a plastic moulded seat with gel-filled pads on top, so that they mould to however I'm sitting, & also to help with a pressure sore that repeatedly breaks open due to how my curve has me sitting. Am finally getting a new chair in a couple of months, & am hopefully receiving funding for a Jay cushion back as well as seat, to provide better support for the lumbar area, & make it less likely to have shoulder rubbing. Currently, I also have a small, padded support that extends from the seat on the right side to provide some support & help with balance - not sure whether that will be done with the Jay back, or whether they will just put extra gel in that pad or something.

              I'm not familiar with the companies you use (I'm in Australia), but if you think they would help, I'm sure you could get Jay seating fitted over there. They're produced by an American company called Sunrise Medical - http://www.sunrisemedical.com/index.jsp then follow the link to Jay. It's not cheap, but is covered by the public health system over here, so might be under a similar arrangement there.

              Wow..sorry that got so long! Best wishes to you & your daughter.

              Cheers :-)

              Comment


              • #8
                Hi Lisa,
                I am new to the group too. My daughter had a brain tumor removed 2 years ago and suffered a massive stroke (spent 5 months in the hospital). This left her with left sided paralysis but did get some movement, enough to walk short distances, with help. Mostly Skylar is in a wheelchair since this all happened. She never had problems with her back before...but 9 months after all of this, Skylar was in the back of the bus (4 days after school started) and the bus driver hit a bump and became airborne. The bus landed hard and Skylar broke got a compression fracture of the T-12 vertabrae. She was in a back brace from Aug 05 to April o6 (at which time she had a curve, Kyphosis of 42 degrees). This past November her curve was 62 degrees. We go this month to discuss rods, nuts, bolts, etc if she is at the predicted 70 degrees. In the meantime I have tried many things and one was getting better support for her wheelchair. It took a long time to get it but we finally got a J-2 back through Wright & Fillipas. It is a hard back with a cushion side for the back and you can angle it straight up or in a reclining angle...whatever you need. It detaches quickly to fold the chair. It has helped with giving better support. I think my daughters problems stemmed from the initial break, having to wear a nasty torso brace, and then nothing at all....which is how I feel she progressed so quickly. I have no idea where she is in her curve but I am expecting to hear that she is 70 degrees or more. This is all very new to me as we've been thrown a ton more then I even mentioned. We too are very afraid that Skylar won't make it through the surgery. She is very fragile with other health issues yet if we don't do the surgery her quality of life is going to go down. If we wait they may not be able to get the correction she would need to be without pain and to get back into therapy again.

                Anyways, sorry for the long post....sort of venting and unsure of surgery. As far as the J-2 back goes I would look into it...it's much more supportive.

                Melanie
                Skylar's mom, age 15

                Comment


                • #9
                  scoliosis and in a wheelchair

                  Hi Melanie,
                  Thank you for replying, sorry it took me awhile to reply. I get too caught up in my kids activities and unable to get on the computer. First I want to say sorry to hear about Skylar, I know what you're going through. When Nicole first got diagnosed with paralysis I was beside myself, here I had a child who wasn't even a year and she was never going to walk run and enjoy life(or at the time that is what I thought). Different story today, she is one of the happiest kids I know, she enjoys little things. An example is for one of her birthday's she got a gift from the Disney Store, the girl left the bag she bought the gift in. She was so excited to get the bag more than the gift.
                  On the note of surgery, I have to let you know it wasn't easy making a decision for her to get her rods in her back to begin with, her respiratory was so compromised from her scoliosis and her prematurate didn't help because she had what's called BPD (bronchopulmonarydisplasia) a condition common in premature births. Finding a doctor to touch her was difficult, it took about 2 years to find a doctor then it took about another 2-3years to get tests to see how she would handle the surgery. We were going to Boston about every 3-4 months for testing, believe it or not how I got started was talking to a physician in Spaulding Rehab in Boston got us going on finding doctors to help. I told the doctor I needed to help her quality of life improve because she had a will to live and I needed to fight for her. Well I'm glad I went through the surgeries and I know if I didn't she would have died by now. I was told in my situation that it's not a permanent fix, but her quality would improve. I don't know the other medical issues your daughter has but I can tell you go with your gut, mom's guts are usually right. I don't know if this helps but get second opinions if you have to, if I listen to the first set of doctors I don't think we would be able to enjoy Nicole as much as we are.
                  I wish you all the luck and if you need to vent I don't mind, honestly I don't have too many people in my area that has a child with severe scoliosis and in a wheelchair.
                  Take care,
                  Lisa Nicole's mom.

                  Comment


                  • #10
                    Hi Lisa,
                    We saw Skylar's ortho yesterday and surgery was decided upon. She is scheduled for June 12th, pending a pulmonary test and echo. She is at 70 degrees Kyphosis now and I too decided that quality of life is what we are in search of. If we wait and she gets too 100 degrees, they would only be able to correct her to where she is now, and that's not good. They said they don't know if this will help her pain or not. But I have to hope it will. I did consult 2 other Ortho's, and most of Skylar's Dr's (she has about 15 specialists). All agree, which makes it easier for me to make the decision. It is very risky as it is but with her health issues her odds are very high that something could go wrong. Our major concerns are bleeding or her having a clot (she has a blood clotting disorder and already had a massive stroke), she is diabetic, has epilepsy, hypertension, tachardia, narcolepsy, osteoporosis, scoliosis, kyphosis, she has no pituitary function so she is on all types of meds that normally the pituitary gland would do....which is huge, and I'm probably forgetting a lot more. Her life is fragile but she is such a strong and determined 15 year old. So we're going to take a deep breath and hope for the best!

                    I'm glad that you were able to get someone to do the operation. That would be horrible not to even have a choice.

                    Melanie

                    Comment


                    • #11
                      Hi Lisa

                      I may be way out of line but I am going to make a suggestion anyway. Dr Rivard at St Justines Hospital in Montreal (The largests Childrens research hospital in Canada) is a brilliant doctor. You may want to talk to him and see if he has anything for you. He may be able to give you some suggestions or refer you to another doctor. His E mail address is

                      charles-hilaire.rivard@recherche-ste-justine.qc.ca

                      Christine
                      from CT, USA
                      6 year old daughter diagnosed 7/06 33* T9

                      Spinecor 8/06 - 8/2012
                      8/06 11* 3/07 5*-8/07 8*-2/08 3*
                      10/08 1* 4/09 Still holding @ 1*
                      10/09 11* OOB 4/10 Negative 6*
                      10/2011 Neg.11* IB 11yrs old 0 rotation
                      4/2012 12* OOB 0 rotation
                      8/2012 18* OOB for 2 weeks. TSLO night time
                      2/2013 8* OOB 3 days TSLO nightime
                      3/2014 8* Out of Brace permanently

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