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Special Needs Child With Scoliosis

Started by rkenney on 03/01/2010 12:37am

My 9 year old son is autistic,has speech apraxia(can't communicate verbally),is developmentally delayed and he has scoliosis.Recently over the past year his curve has progressed from 40 degrees to 56 while wearing a milwakee brace.He is scheduled to be put into a cast in the next week to try to help correct his curve.Due to all his other concerns he has some sensory input issues and he will be unlikely to be able to tell us when the cast is painful ie.sores.So my concern would be the cast doing more physical and mental damage than good.I was hoping if someone could recomend me to another group that has other special needs children with advanced scoliosis.I also was wondering if a cast would be a complete waste of time and if we should just opt for the operation even knowing that he is a great distance away from being fully grown.Thanks for your time.

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You might try the national scoliosis foundation. The founder is a guy by the name of Joe O'Brien and he is extremely knowledgeable (and a scoliosis patient). I might start there.

National Scoliosis Foundation
nsf@scoliosis.org
www.scoliosis.org

I would also try a respected regional children's hospital - who has experience with similar cases. The Scoliosis Research Society is another great resource and represents the top pediatric deformity surgeons in the country.

Good luck...

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I too am facing spinal surgery but when I saw your post re your child with special needs I felt i HAD to respond. I can't really respond as to what you should do but I can offer some expertise on working with children and adults who have autism, developmental delays, etc. because that is what I do. Although your son is non-verbal he does have ways of communicating as I am sure you have discovered, so you will have to be exceptionally attuned to however he communicates such as behaviors, etc. Also, if there is a bright side, the cast may serve to calm him due to his autism. Working with many autistic children we have found that many children with autism feel calmer when in tight spaces. I don't know what state you live in but there are many sources of assistance, such as waivers, that are available to help provide in-home supports to assist with care, teaching, socialization, etc. If you currently don't have any supports I highly suggest you check into applying for a waiver which would help life-long. Also, my step daughter had to have a cast for scoloisis when she was young and it was the best thing we did for her. She is grown now and has no problems because we took this step. May God bless and best of luck.

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I think this is really a big problem. It is good thing that you will put up a brace because I think it is not too late for him to have a correct posture. I know that it is quit expensive but it is okay because as a parent it is really difficult for us to see our children suffering. I know that there are many ways to gain money and there is payday loans to help you also.

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Hi
I have a 11 year old special needs child who has scoliosis .I can not tell you what to do. I will let you know what my doctor told me at 50 degree curve they do surgery. Maybe you should get a second opinion i did. I found a great doctor he's 11/2 hrs from my house but well worth the trip. Tomorrow we go and set up the surgery for my daughter she has been threw 3 braces and is in so much pain.Her curve is getting worst and i can not keep the brace on her. They have a new surgery now I'll get the name for you if you email me back. its only been done in one hospital until my daughters doctor went up and study it. He perform his first one down here and it went very well Scary, i know but we have no other choice at this point. She crys every day from her back pain and she is at a 30 degree curve. Good luck to you and your son.

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I have also been dealing with a 13 yr old that has pain every day and night-without anything relieving it--I have tried every home remedy and every type of physical therepy we can find, nothing helps--we have repeately been told that scoliosis can not cause pain---I know that this is not correct--very sad thing to watch any child in pain--but then to not find a cure is the most frustrating thing ever==

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Gabrielle--I would love to know about this new type of surjury you referred to, as my daughter went from 20 degrees to 47 degrees in 7 months--As they do not believe this causes pain, they will not do anything for her until she reaches 50 degrees-and then you go on a waiting list--I am going to take my child to the university of Utah as they are ranked very high for pediatric spine treatment-But the search for the true treatment has been very frustrating, and endless--thanks

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Didn't your doc give you some suggestions? Every surgeon I have spoken to has given me their recommended rehab protocol with a physical therapist. Thats your best bet.
I have found pilates to be a great tool for strengthening the core. Both yoga and pilates are a great introduction to get back into activity.
mcsa

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