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15-year-old daughter with severe scoliosis: Not sure where to turn
Hi I have a 15 year old daughter. She has severe scoliosis. In Feb she was put into an upper torso restraint for 7 mins. She has had immobility.. numb hands.. not able to breathe for the first month.. she needed her inhaler. Inconstant for a short period of time. All of these symptoms happened right after the restrainment. I’ve taken her to 2 separate drs.. 1 at Shriners and he didn’t even listen to her symptoms. He’s just focused on scoliosis.. she has bulging disc which he is saying happened before the incident.. I took her for a second opinion and that orthopedic surgeon hadn’t even saw the mri.. and he told me exactly what the first dr did.. later to find out they had spoken. I asked him if she had transverse ligament instability he said her pediatrician probably scanned her.. which he hadn’t. So he took her and got a xray. Came back in and said her neck is fine. She doesn’t have instability… which I now know he needs mri to be able to see if she has that or not! I’m needing help! I’m not sure what to do from this point!
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@momma3456
Where do you live?
Have you been taking your daughter to orthopedic doctors since she was young?
Has she had spine treatments and physical therapy since she was young? Has your daughter had any spine surgeries, epidural injections, etc.?
Why was your daughter out in an upper torso restraint? What doctor recommended this and why? What was this supposed to do/help?
@momma3456
Has your daughter had MRIs of her full spine and has she seen a neurologist for EMG/nerve conduction studies?
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1 Reaction@dlydailyhope
My daughter has Down syndrome.. I just found out she has severe scoliosis after the restraint because I took her in to get X-rays to make sure nothing was wrong! I found out she has scoliosis.. her pediatrician never checked her for this when she’s done her checkups.. the urgent care scheduled a mri.. the first radiologist said she had degenerative bone spurs.. I thought about that and couldn’t see how she would have those so I called radiology back and asked them to overlook it again. The main radiologist called and said she doesn’t have bone spurs.. she has mild bulging disc. He never said anything about degenerative mind bulging disc and didn’t put it in the report he put she has mild bulging disc c5-t1!! So no she just started seeing a spine specialist in April! Her teacher and aide put her in an upper torso restraint because my daughter threw pencils and a mouse to a pc. She is in the msd room at school.. which now she is homeschooled after that incident. Her symptoms started after the restraint but I can’t get a Dr to say this.. they are focused on scoliosis and not listening to her symptoms!
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1 Reaction@dlydailyhope no she hasn’t been referred to a neurologist.. I’ve asked her pediatrician to refer her and he won’t!! I’m not sure why.. because I need to know what’s going on with my daughter!
@momma3456
What state do you live in?
It sounds like you need a new pediatrician that specializes in special needs children and Down syndrome treatments, a new pediatric spine specialist and neurologist for testing, a physical therapist who specializes with special needs children, etc.
If I was in your situation, I would talk to an attorney and consider filing a charge/claim against the school that put your child in the restraint. I would also get all medical records and notes and review them in detail. You should clearly see the list of radiologist’s impressions from the MRI. It should show in the report if there are osteophytes/bone spurs, disc bulges, impact on spinal cord and nerve roots (stenosis/compression), etc.
Your child may be having extra symptoms beyond the normal due to chronic pain/neurological symptoms that need to be properly assessed and treated. Medications may need to be adjusted and pain management options explored.
That’s what has me confused.. is the radiologist said she had mild bulging disc c5-t1… didn’t mention them being degenerative… and the spine dr said she has degenerative bulging disc and said they were there before the restraint.. and I’m thinking how does he know this!
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1 Reaction@momma3456
I have just read your post and I want to say I congratulate you on being such a caring and positive mother to your daughter. I have 4 children who are neurotypical, but my best friend has a son, now 28, who has autism and an intellectual disability. Over the years she has worked and worked to get her son the best treatment and life he can hope for. It is not so much the children in this situation who suffer, it is the mothers and fathers who work hard, day in and day out, to give their children a good life. It took years for my friend to put together a good team of doctors and care workers for her son. It was agonizing dealing with one doctor after another, some of whom gave her contradictory advice. Eventually it all came together, but not before she went through heartache after heartache, so I appreciate and admire what you are doing for your daughter. By the way, when she was in high school, my daughter had a
Down syndrome girl in her class. She wasn't too hot academically, but they discovred she loved to swim. She won all the swimming races at her school, and ended up competing at State level. I recently heard that she is employed at a company as an office worker. Disability is hard on everyone, but a gold star for pushing to get her properly diagnosed and treated.
Best wishes from Ellu in Melbourne, Australia.
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1 Reaction@ellu thank you for this post! It does get hard.. but I will keep fighting for my daughter! Your words helped encourage me!