scoliosis/cerebral pasly

[disneyobessed]

My son is 9 years old and today he had his wellness apt. He has cerebral pasly.. mixed quadripeligia.. is walking on his own with someone close by.. started last year after his hamstring lenghth. surgery!! Anyways.. today his pediatri thought he looked like it may look like he might be getting scoliosis. He has to go to his ortho. may 28 to be checked.. in the meantime i booked an apt with the chiropractor in the area that works with kids with neuromuscular problems. Has anyone else had a child with cp/scoliosis..if so what route did you have to follow with it.. I looked at his back when I got home and i dont see it at all.. His pedi. didnt know if it was the way he was standing..because he cant stand well on his own and bend over.. any advice here is appreciated!

 

[maroo]

My son is 9 years old and today he had his wellness apt. He has cerebral pasly.. mixed quadripeligia.. is walking on his own with someone close by.. started last year after his hamstring lenghth. surgery!! Anyways.. today his pediatri thought he looked like it may look like he might be getting scoliosis. He has to go to his ortho. may 28 to be checked.. in the meantime i booked an apt with the chiropractor in the area that works with kids with neuromuscular problems. Has anyone else had a child with cp/scoliosis..if so what route did you have to follow with it.. I looked at his back when I got home and i dont see it at all.. His pedi. didnt know if it was the way he was standing..because he cant stand well on his own and bend over.. any advice here is appreciated!

I can tell you what our experience was. I take care of a young lady...15 yrs old...with severe CP. she can't walk or stand on her own. She is, though, fine from the neck up. Communicates well and excels in school. To give you an idea of Lauren!

She has CP and she got a baclofen pump (ITB) in June of 07, I believe. This was a very difficult surgery for her. She ended up sick and back in the hospital from what should have been an easy surgery.

Fastforward to December 08. Her mild scoliosis (I believe 30 degrees, maybe?) very quickly got worse. Closer to 70. And this happened very fast. We believe it was a side effect of the baclofen, since it relaxed Lauren's back muscles, too, so they were not supporting her spine as much.

She ended up having the back surgery where they put 2 rods to hold her spine together. She did not have to go all the way to the pelvis, which was a good thing. The surgery went well, although she did have a serious complication in the recovery room that almost killed her (her platelets went down to 5) and she was bleeding out. But the hospital was great - very prepared - and saved her life.

They had her sitting up in a chair the next day and up in her wheelchair "walking" the following day. By the 4th day, she was going home. She ended up needing a new van because she grew about 3 inches and could not fit in her old one anymore. Her head hit the door as she was driving in.

Long story short. Lauren had the surgery and did great overall! She has some back pain now, but not caused by the rods, more caused by her position in her wheelchair.

Every case is different. But that was our experience. Feel free to PM me anytime to talk. I don't often check this side of the board...

Hang in there! Find the best docs to participate in his care and you will be good to go!!!

 

[SueM in MN]

My youngest DD has cerebral palsy (mixed type, spastic quadriplegia) and also has scoliosis. I have also done scoliosis screening in schools as a Public Health Nurse.
Many people have scoliosis, which just means a curvature of the spine. If it is mild, the person may not even know they have it and may not need any treatment. For people without other disabilities, the cause of most scoliosis is unknown, it does tend to run in families and it is more common in females (in fact, both my older sister and myself have mild scoliosis).

People with conditions of the nerves or muscles are more likely to develop scoliosis than people without those conditions.
People with low muscle tone (hypotonicity) can get scoliosis because their muscles don't support their spine against gravity. That allows the spine to be pulled unevenly by gravity, causing scoliosis. People with high muscle tone (spasticity) may have muscles that pull unevenly; the stronger muscles pull the spine more than the weaker muscles, causing scoliosis.

Scoliosis tends to appear or worsen at the time of growth spurts and many people's scoliosis will stabilize once they are full grown. This is the case for people with or without other disabilities.

The Orthopedic doctor will look at things like

• leg length (sometimes legs that are a little different in length can make the person appear to have scoliosis when they don't),
• how he stands (sometimes what looks like scoliosis is not really a curve, but is related to them not standing evenly)
• strength of the muscles
• muscle tone and whether your child has more spasticity/different tone on one side of the body than the other.

They will also take xrays of the spine and may also do other tests, like an MRI (an image similar to an xray that is more detailed and uses magnetic forces and computers to make the image) or a CAT scan (Computer imaging).

Treatment depends on a lot of things, including:

• the degree of the curve
• where the curve/direction of the curve
• how quickly the curve is progressing
• the age of the person and how close they are to being full grown

Treatment can vary a lot, depending on all those things. Sometimes, the only treatment is to watch the curve to make sure it is not progressing.
Sometimes a brace is used to support the back; that may be necessary long term or just until the person reaches full growth.
For some people who use wheelchairs, their chair may be adjusted to support their back better and prevent the stronger muscles from being able to pull the spine out of alinement. That is the only treatment my DD has had (other than being watched).
For some people, Baclofen is used to relax spastic muscles.
And, in cases where either the curve is severe or is progressing quickly, spinal surgery like maroo wrote about might be necessary.

Here are a couple of good websites that talk about scoliosis.
Mayo Clinic website

National Scoliosis Foundation FAQs page

Medline is a little harder to read, but has good information.

Here is a page about scoliosis in people with cerebral palsy.

Hopefully with all this, you will be better prepared when your child does see the Orthopedic doctor.

 

[disneyobessed]

My youngest DD has cerebral palsy (mixed type, spastic quadriplegia) and also has scoliosis. I have also done scoliosis screening in schools as a Public Health Nurse.
Many people have scoliosis, which just means a curvature of the spine. If it is mild, the person may not even know they have it and may not need any treatment. For people without other disabilities, the cause of most scoliosis is unknown, it does tend to run in families and it is more common in females (in fact, both my older sister and myself have mild scoliosis).

People with conditions of the nerves or muscles are more likely to develop scoliosis than people without those conditions.
People with low muscle tone (hypotonicity) can get scoliosis because their muscles don't support their spine against gravity. That allows the spine to be pulled unevenly by gravity, causing scoliosis. People with high muscle tone (spasticity) may have muscles that pull unevenly; the stronger muscles pull the spine more than the weaker muscles, causing scoliosis.

Scoliosis tends to appear or worsen at the time of growth spurts and many people's scoliosis will stabilize once they are full grown. This is the case for people with or without other disabilities.

The Orthopedic doctor will look at things like

• leg length (sometimes legs that are a little different in length can make the person appear to have scoliosis when they don't),
• how he stands (sometimes what looks like scoliosis is not really a curve, but is related to them not standing evenly)
• strength of the muscles
• muscle tone and whether your child has more spasticity/different tone on one side of the body than the other.

They will also take xrays of the spine and may also do other tests, like an MRI (an image similar to an xray that is more detailed and uses magnetic forces and computers to make the image) or a CAT scan (Computer imaging).

Treatment depends on a lot of things, including:

• the degree of the curve
• where the curve/direction of the curve
• how quickly the curve is progressing
• the age of the person and how close they are to being full grown

Treatment can vary a lot, depending on all those things. Sometimes, the only treatment is to watch the curve to make sure it is not progressing.
Sometimes a brace is used to support the back; that may be necessary long term or just until the person reaches full growth.
For some people who use wheelchairs, their chair may be adjusted to support their back better and prevent the stronger muscles from being able to pull the spine out of alinement. That is the only treatment my DD has had (other than being watched).
For some people, Baclofen is used to relax spastic muscles.
And, in cases where either the curve is severe or is progressing quickly, spinal surgery like maroo wrote about might be necessary.

Here are a couple of good websites that talk about scoliosis.
Mayo Clinic website

National Scoliosis Foundation FAQs page

Medline is a little harder to read, but has good information.

Here is a page about scoliosis in people with cerebral palsy.

Hopefully with all this, you will be better prepared when your child does see the Orthopedic doctor.

Thank you so much for all this. Im going to look at the website now for scoliosis for people with CP. I have looked at his back at all angels and I dont see it. His ped. didnt know if it was the way he was standing as you have mentioned..

Thanks to both of you who took the time to post. I really appreciate it. Wish me luck! Going to the chiropractor Monday with him and they will do exrays.. He doest see his ortho until may 28 and the chiro in town works with kids with nuero muscular problems.!

 

[blondietink]

For what it's worth ... my son has Down syndrome and very low muscle tone in his torso. When he was 15 we noticed his posture was getting worse so we took him for x-rays. He had a 30 degree scoliosis curve. By the time hwas 16 it had progressed to a 70 degree curve! We consulted with the local Children's Hospital and our closest Shriner's Hospital, which specializes in orthopedic problems with special needs kids of all kinds. Anyway, we decided to go with Shriner's due to the expertise there. He had the surgery 3 months after his curve was measured at 70 degrees with a twist and when he went into surgery it was over 90 degrees with a twist! His progression was very rapid and he was having trouble breathing already. I would suggest that if you have a Shriner's Hospital near you that you go for a consultation with them. Our local Children's Hospital only did 1 surgery per month for scoliosis. Shriner's did 1-2 per week. We went with the most experienced person. Good luck! My son was straightened to a 30 degree cruve ... they didn't dare do more, but he is fine. Had the surgery on a Tuesday and went home on Friday.