Children with SCI

[Karla523]

Soimumireland,
I am not familiar with the games you mentioned, but if they involve running around then yes, it would be an excellent idea to have an assistant race him around in his chair, if he can't do that himself. I think you are on to a great idea with purchasing a cheap chair for the PE class. The kids can do relay races, etc. that your son can participate in. It should also be a boost to his self esteem since he will be "better" at wheeling than his classmates Always a bonus lol. There are many games they can play with balls in which he should be able to throw/catch since he has use of his upper body. If he was a little older, I might suggest having classmates assist him during PE, but at his age I would be afraid they might push the chair over. You sound like you are on the right track, though. You might have to be the one to give them suggestions, but who really cares as long as he gets what he needs. Let us know if you do purchase the extra chair. I would love to hear how it turns out. That is such a good idea, I might even do it in my own classroom when I have one next year!!

[soimumireland]

Pediatric Lokomat

Might be of interest


PEDIATRIC LOKOMAT®: INTENSIVE LOCOMOTION THERAPY FOR CHILDREN
In November 2005, the first Pediatric Lokomat® worldwide was installed at the Rehabilitation Center in Affoltern which is part of the University Children’s Hospital of Zurich in Switzerland. With the introduction of the Pediatric Lokomat®, intensive locomotion training is now also available for small children with cerebral palsy or other neurological disorders such as stroke, spinal cord injuries and traumatic brain injury.



REHABILITATION CENTER
for children and young people

Mill mountain route 104
8910 Affoltern at the Albis Tel. +41 (0)44 762 51 11
Fax +41 (0)44 762 51 22
E-Mail: rehab@kispi.unizh.ch
Internet:
Rehabilitationszentrum Affoltern am Albis

[soimumireland]

scoliosis in SCI kids - starting 2013 with hope

We are just back from our 3rd trip to Shriner Hospital in Philly. last year Dr Betz had suggested VBT (Vertebral Body Tethering) as Sean's spinal curve was at 40 degrees and his only other option is to have a spinal fusion - hip to T3.

We checked out VBT with our doctor's in Ireland, they had no experience of the procedure and are very skeptical. They did agreed that Dr Betz and Shriners was the best place but would not recommend such a new / unproven procedure. However, as a fusion would remove all of Sean's flexbility they could understand why we would consider VBT.

Anyway Last week Sean's xray showed a curve reduced to 35 degress (don't know how) and Dr Betz believes that his tightening hips and pelvis alignment are effecting the curve. He recommends releasing the tendons and hopefully if that works we will not need any spinal surgery. If it doesn't VBT is still an option.

In Ireland we had only one option do nothing until he had detoriated so bad that a spinal fusion would be a blessing. Thankfully Dr Betz adapts his treatment plan to suit to suit the patient and getting them the best option

[crypticgimp]

We are just back from our 3rd trip to Shriner Hospital in Philly. last year Dr Betz had suggested VBT (Vertebral Body Tethering) as Sean's spinal curve was at 40 degrees and his only other option is to have a spinal fusion - hip to T3.

We checked out VBT with our doctor's in Ireland, they had no experience of the procedure and are very skeptical. They did agreed that Dr Betz and Shriners was the best place but would not recommend such a new / unproven procedure. However, as a fusion would remove all of Sean's flexbility they could understand why we would consider VBT.

Anyway Last week Sean's xray showed a curve reduced to 35 degress (don't know how) and Dr Betz believes that his tightening hips and pelvis alignment are effecting the curve. He recommends releasing the tendons and hopefully if that works we will not need any spinal surgery. If it doesn't VBT is still an option.

In Ireland we had only one option do nothing until he had detoriated so bad that a spinal fusion would be a blessing. Thankfully Dr Betz adapts his treatment plan to suit to suit the patient and getting them the best option

have you tried a medical pilates table? these are great for stretching and would help loosen the hips. i'd try that or accupuncture before considering surgery.

[Gordy1]

We are just back from our 3rd trip to Shriner Hospital in Philly. last year Dr Betz had suggested VBT (Vertebral Body Tethering) as Sean's spinal curve was at 40 degrees and his only other option is to have a spinal fusion - hip to T3.

We checked out VBT with our doctor's in Ireland, they had no experience of the procedure and are very skeptical. They did agreed that Dr Betz and Shriners was the best place but would not recommend such a new / unproven procedure. However, as a fusion would remove all of Sean's flexbility they could understand why we would consider VBT.

Anyway Last week Sean's xray showed a curve reduced to 35 degress (don't know how) and Dr Betz believes that his tightening hips and pelvis alignment are effecting the curve. He recommends releasing the tendons and hopefully if that works we will not need any spinal surgery. If it doesn't VBT is still an option.

In Ireland we had only one option do nothing until he had detoriated so bad that a spinal fusion would be a blessing. Thankfully Dr Betz adapts his treatment plan to suit to suit the patient and getting them the best option

Wow, thanks for posting this. It is good to see a potential alternative to fusion (which we are desperately trying to avoid with my son for the reason you give above, plus our "fear" of surgery due to the outcome from his previous surgery). Just a shame VBT still involves surgery....

I see that it is recommended for children less than 10 years old (presumably because most growth occurs before the age of 10, so the technique will have less benefits thereafter?). My son will be 10 in July....

FYI our sons X-ray angle measurements tend to vary, not necessarily logically. He does get acupuncture, chiropractor, and Project Walk-type exercises (so similar to crypticgimp's suggestions). Combine that with the variances in the x-ray set-up and I'm not surprised that the end measurements don't always seem to add up.

When we were in Baltimore last year (Johns Hopkins, for radiotherapy of that remaining b@stard of a tumour), we took the opportunity to see a spine specialist, who said that as long as my sons spine remains as flexible as it is, then he would delay any recommendation for fusion (but fusion was the only option presented, with the view that it will be required at some point). So the acupuncture etc will be continuing!

Given how near Baltimore is to Philadelphia I wish we'd taken the opportunity to visit Shriners there, but I guess we were a bit busy worrying about the radiotherapy to think about too many other things at the time....

[crypticgimp]

incorrect, growth continues well into the 20s, especially for boys. so delaying surgery as long as possible is a plus as you'll have a longer torso and more lung capacity. fusing too young, then you run the risk of rods breaking later in life. i had this happen to me and i was fused at age 11/12. rods broke when i was 18/19yrs old and refused at age 21/22.

honestly, i havent noticed much flexibility differences before and after surgery. i think this fear is often overplayed. i am fully fused from T1 - L5. partial fusions carry a huge risk of issues in late adulthood as there is more strain on the levels above the fusion causing degenerative disk disease. alternatives are flexible fusions but i dunno of how prevalent they are in kids, you mostly see these in adults who can walk.

[Gordy1]

incorrect, growth continues well into the 20s, especially for boys. so delaying surgery as long as possible is a plus as you'll have a longer torso and more lung capacity. fusing too young, then you run the risk of rods breaking later in life. i had this happen to me and i was fused at age 11/12. rods broke when i was 18/19yrs old and refused at age 21/22.

honestly, i havent noticed much flexibility differences before and after surgery. i think this fear is often overplayed. i am fully fused from T1 - L5. partial fusions carry a huge risk of issues in late adulthood as there is more strain on the levels above the fusion causing degenerative disk disease. alternatives are flexible fusions but i dunno of how prevalent they are in kids, you mostly see these in adults who can walk.

Ok I thought that MOST growth would have occurred by age 10 (as we had this discussion with doctors prior to my son's radiation treatment, as that can/will stop some future growth), but I agree that some growth will continue.

Since my last post, I've realised that Sean must be older than 10 now, so Dr Betz is obviously ok in recommending it for older children.

I also understood from doctors that one of the reasons for fusion at 11/12 (with growth rods) is that they are concerned with the lack of lung capacity without the rods due to the effects of scoliosis. Did you have growth rods, that can be lengthened yearly?

And just to clarify, do you support the idea of fusing at a young age, or not? I can't tell!

[crypticgimp]

Ok I thought that MOST growth would have occurred by age 10 (as we had this discussion with doctors prior to my son's radiation treatment, as that can/will stop some future growth), but I agree that some growth will continue.

Since my last post, I've realised that Sean must be older than 10 now, so Dr Betz is obviously ok in recommending it for older children.

I also understood from doctors that one of the reasons for fusion at 11/12 (with growth rods) is that they are concerned with the lack of lung capacity without the rods due to the effects of scoliosis. Did you have growth rods, that can be lengthened yearly?

And just to clarify, do you support the idea of fusing at a young age, or not? I can't tell!

i did not have growth rods. i know of one person that did who said it was painful. but no, majority of growth happens during the 12 - 18yr range

and correct, if your curve is so bad, you'll be squeezed to death before you even reach adulthood, it's why i was fused at 11/12.

i'm in support of doing what is best for each child. and that is different for each child and needs to be weighed appropriately and with as much information as possible.

the dangers tho with these partial fusions are well documented. i am super happy to be fully fused and have gone on to do multiple sports, drive etc. same with everyone i know that is fully fused. so the "fear" of lack of flexibility shouldnt be a mitigating factor.

[soimumireland]

Wow, thanks for posting this. It is good to see a potential alternative to fusion (which we are desperately trying to avoid with my son for the reason you give above, plus our "fear" of surgery due to the outcome from his previous surgery). Just a shame VBT still involves surgery....

I see that it is recommended for children less than 10 years old (presumably because most growth occurs before the age of 10, so the technique will have less benefits thereafter?). My son will be 10 in July....

FYI our sons X-ray angle measurements tend to vary, not necessarily logically. He does get acupuncture, chiropractor, and Project Walk-type exercises (so similar to crypticgimp's suggestions). Combine that with the variances in the x-ray set-up and I'm not surprised that the end measurements don't always seem to add up.

When we were in Baltimore last year (Johns Hopkins, for radiotherapy of that remaining b@stard of a tumour), we took the opportunity to see a spine specialist, who said that as long as my sons spine remains as flexible as it is, then he would delay any recommendation for fusion (but fusion was the only option presented, with the view that it will be required at some point). So the acupuncture etc will be continuing! ....

The problem is there is no right answer when it comes to the spine. Sean's spine is still very flexible. I would not worry that your son spine has stopped growing at 10. I was told children stop growing at 16 - there might be some difference between girls and boys. Sean is 11 and althought Shriners are now considering tendon lengthening and maybe repositioning his hips/pelvis to see if this addresses his spinal curve. If that does not work they have not ruled out VBT.

We were also told (in Ireland) that a hip to T3 spinal fusion would be the only eventually option for Sean but only when he is bent so far over he can't function. I don't want to let things get that far.

Given how near Baltimore is to Philadelphia I wish we'd taken the opportunity to visit Shriners there, but I guess we were a bit busy worrying about the radiotherapy to think about too many other things at the time....

Gordy - Don't tie yourself up in knots about concentrating on one thing over something else. It happens to us all. I
kick myself that I concentrated on Sean UTIs and spine that I neglected his hip. You have bigger issues to worry about. Keep chipping away, and we are here if we can help at all.

[crypticgimp]

The problem is there is no right answer when it comes to the spine. Sean's spine is still very flexible. I would not worry that your son spine has stopped growing at 10. I was told children stop growing at 16 - there might be some difference between girls and boys. Sean is 11 and althought Shriners are now considering tendon lengthening and maybe repositioning his hips/pelvis to see if this addresses his spinal curve. If that does not work they have not ruled out VBT.

We were also told (in Ireland) that a hip to T3 spinal fusion would be the only eventually option for Sean but only when he is bent so far over he can't function. I don't want to let things get that far.



Gordy - Don't tie yourself up in knots about concentrating on one thing over something else. It happens to us all. I
kick myself that I concentrated on Sean UTIs and spine that I neglected his hip. You have bigger issues to worry about. Keep chipping away, and we are here if we can help at all.

i just have to say that you all are doing GREAT. just by being supportive of your children means the world. sadly, there isnt a real roadmap :/ but you are doing well and because of that your kids will grow up healthy and strong

[canuck]

I have Spina Bifida and between my Kyphosis Surgery when I was 9 and Scoliosis surgery at 16 I'm fused T6 to my Sacrum with the exception of L2. Good range of motion except a bit restricted when I twist side to side-ie the sort twisting you do when you shoulder check or look backward when backing up and driving is the only tiime I notice the restricted ROM. Both of my rods are broken (Luque Rods) the first one bent about 6 months post op, surgeon went in and clipped the end that was bent. 2nd rod broke sometime in my 20's. My spine has been reviewed a few times and fusion is solid. No issues at L2 so far, currently 43, a few issues in my C spine but that could be normal aging-I don't have time to go looking for my C-Spine X-ray report.

[noirin's mum]

scoliosis article

Hi thought i would keep this post alive and wanted this article i wrote on scoliosis available to anyone else that it may help. It is quite subjective as it is our experience to date and the ball is forever rolling. Latest is the likelihood of fusion in 1-2 yrs but still a big fan of bracing.
hope it attaches.

[soimumireland]

Just to update Sean is now 15. His spine is still growing. He has just had a spinal fusion t2 - pelvis in Shriners Hospital in a Philadelphia. His curve was 95 degrees increasing by 20 degrees since his check up in October when we decided to go ahead with the fusion. The reason we decided to go ahead was because for Sean's hip which were becoming unaligned which would have meant he would force to sit on one cheek which would leave to pressure sores. Something we never considered/ heard as an issue 3 years ago. Sean is recovering well and has 6 months of restrictions where he must use an electric chair, no bending, twisting, transfering to ensure the rods do not break. These restrictions are a contentious issues where the common theory is no restrictions. I will update you how we get on.

[Jim]

Hope all goes well.

[Domosoyo]

Thank you for the update. It is a good resource thread for anyone with a child with SCI. Mine is now 20. She was injured when she was 12.