HI there,

We are in the process of beginning assessment for SDR for my 6 year old son.
I wondered if anyone can describe the types of exercises/therapy post-SDR. Reason I am asking is it looks like compliancy and behaviour is going to provide a barrier to him getting put forward for this surgery by his paediatrician, and I need to know what type of exercises patients have to do in order to see if my son will do these. He is currently doing Conductive education where they do exercises, walking practise, stair climbing, wall-bar exercises, stretching etc all day long and he has no problem and no fuss doing any of this, because it is an established routine. But anything new, ie a new situation, he "plays up" and moans until he is used to the things he is told to do. Once this becomes a routine, he is fine. At the moment he even asks me morning and night to do his exercises with him, he loves it so much! Because we make it fun for him. But anything unfamiliar, he struggles with until he gets the gist of it.
I need to find out what he will have to endure, and see if I can get him ready for this, in order to convince our paediatrician to put our case forward. He is one determined and strong boy, who knows what he wants, and we want the best for him. I guess if I can practise these things, and show on video that he has no problem with this.
Any ideas??
Many thanks.

If you're considering going to St. Louis Children's Hospital, you could call and ask if they'd send you the handouts of pre-op and post-op exercises so you could look them over. I'm pretty sure they would send them to you. We did not do all of the post-op ones. Some were to hard for our son and we eventually just focused on the key ones for Noah. Hope this helps.
nwmom

thanks nwmom - unfortunately we are from NZ and they don't do this surgery here, so are looking at Australia to have it done. Just any overall idea on the sorts of things that need doing would be fine.

inner thigh squeezing, sit to stand, scissor legs lying on floor, lift buttocks off floor while lying on floor, lie on tummy and kick leg to buttocks, hamstring stretches...that's all I remember off the top of my head. Will try and check the booklet soon. Have you heard any more since posting?
nwmom

Thanks so much - we have just videoed all of these things actually in preparation to send over to Aussie for assessment - we have had no problems getting my son to do this and have had contact with a lovely physio from Aussie who has given us some ideas of what sorts of things are involved, which parallels what you have just written.
So at the moment in the process of sending over all of this information to then hopefully get a formal assessment. We have struck some barriers so far from a physio here who has expressed concerns over my sons behaviour to do the exercises etc but she doesnt know how to handle my son and only sees him 6 weeks after each botox and we have now refuted this with videos to prove how happy he is to do all this therapy/eexercises EVERY day at his school (he attends Conductive Education)


Many thanks for all your input newmom
What was your child's recovery rate like??
We have been told 6 weeks inpatient in hosp then another 6 weeks living in accom close to hosp and attending therapy every day then we may be able to go home and do therapy in NZ after this for up to 1 year.

Cheers
Batty

inner thigh squeezing, sit to stand, scissor legs lying on floor, lift buttocks off floor while lying on floor, lie on tummy and kick leg to buttocks, hamstring stretches...that's all I remember off the top of my head. Will try and check the booklet soon. Have you heard any more since posting?
nwmom

Hello Batty,
So glad to hear the good news! A good therapist can make all the difference! The ones where we go here in Winston-Salem have been trained at UNC, where they teach therapists how to let the child lead the way in therapy. To use what the child wants to play with and integrate that into his therapy. Anyway, that's been key for Noah's cooperation.
After SDR, we did therapy with toys we bought from yard sales. Our therapist helped us figure out how to make games out of the exercises. Then he got burned out anyway, and we started taking him to malls, hospitals, churches and other places that had magic doors or elevators so we could do his therapy there (he loves magic doors and elevators).
His recovery rate is different from what your son's will be, simply because Dr. Parks uses a less invasive technique to perform the surgery (only goes into one vertebrae). Noah was in hospital for a week. He was very weak but managed to take about 5 steps on his on the day before he left the hospital. Used a wheelchair for long distances for 3 weeks or so. First several months, he tired easily. Got an estim unit about 4 months after surgery, and that helped tremendously in building his muscle strength. We all really worked hard at sticking to the therapy so that the surgery would pay off.
He sits straighter, does not have the tone (which is awesome), is stronger and has more endurance than before. Can do many more things than before, too. Now mainly has trouble putting his heel down (out of habit mostly) and his left foot pronates alot.
I'm so thankful every day that he had the surgery and hope you all have great success with it, too!
nwmom

Hello Batty,
So glad to hear the good news! A good therapist can make all the difference! The ones where we go here in Winston-Salem have been trained at UNC, where they teach therapists how to let the child lead the way in therapy. To use what the child wants to play with and integrate that into his therapy. Anyway, that's been key for Noah's cooperation.
After SDR, we did therapy with toys we bought from yard sales. Our therapist helped us figure out how to make games out of the exercises. Then he got burned out anyway, and we started taking him to malls, hospitals, churches and other places that had magic doors or elevators so we could do his therapy there (he loves magic doors and elevators).
His recovery rate is different from what your son's will be, simply because Dr. Parks uses a less invasive technique to perform the surgery (only goes into one vertebrae). Noah was in hospital for a week. He was very weak but managed to take about 5 steps on his on the day before he left the hospital. Used a wheelchair for long distances for 3 weeks or so. First several months, he tired easily. Got an estim unit about 4 months after surgery, and that helped tremendously in building his muscle strength. We all really worked hard at sticking to the therapy so that the surgery would pay off.
He sits straighter, does not have the tone (which is awesome), is stronger and has more endurance than before. Can do many more things than before, too. Now mainly has trouble putting his heel down (out of habit mostly) and his left foot pronates alot.
I'm so thankful every day that he had the surgery and hope you all have great success with it, too!
nwmom

What is SDR?

It's a surgery--SDR stands for spinal dorsal rhizotomy. It's a serious type of surgery where they go into the spinal cord and cut a percentage of the nerves that cause spasticity in the legs. Requires lots of post-op therapy.

It's a surgery--SDR stands for spinal dorsal rhizotomy. It's a serious type of surgery where they go into the spinal cord and cut a percentage of the nerves that cause spasticity in the legs. Requires lots of post-op therapy.

Thank you for explaining it to me. My son ( he is a twin) is 3 and has CP diplegia. His left side of his body is affected more than his right side. He just started walking independently (just a few feet) without his walker. He has lots of spasticity in his legs. Very, very high tone. I'm hoping through lots of p.t., o.t., botox and stretching it will become less as he gets older, but I know it is something that he can't outgrow. We'll see.

open_the_door,
That's what our son has--spastic diglegia, affecting his left side more than his right. He's a twin, too. He had a lot of dynamic tone, but has no tone problems now since having the surgery. Now it's more of foot pronation, old motor patterns (walking on toe on left foot at times), muscle strengthening issues.
Best of luck with the Botox and therapy--and I'm glad to hear he took some steps without his walker. That must've been exciting for him!
nwmom

My son is a twin too!!! And same, more on the RIGHT side than the left. My son can walk about 50 metres by himself, but very laboured. The botox has been great so far, and recently we even got him walking from his class down the hall to assembly by himself with AFOS in barefeet, helmet on, and very unsteady but very determined to do it! we have been told that after SDR the kids are usually in hosp for 6 weeks! Then another 6 weeks of living in accom close to the hosp and having regular twice daily therapy, then after this, we could probably go home and continue. I also have been told that they cut 25 percent of the roots where they do the surgery in Australia. If we get this far, this will be a really long hard road, but we are determined for this to work and for us to get the best for our son if the surgery suits him. We are still in the investigation stage, getting all the info ready to send over.
Thanks for all your input newmom xxx

My son is a twin too!!! And same, more on the RIGHT side than the left. My son can walk about 50 metres by himself, but very laboured. The botox has been great so far, and recently we even got him walking from his class down the hall to assembly by himself with AFOS in barefeet, helmet on, and very unsteady but very determined to do it! we have been told that after SDR the kids are usually in hosp for 6 weeks! Then another 6 weeks of living in accom close to the hosp and having regular twice daily therapy, then after this, we could probably go home and continue. I also have been told that they cut 25 percent of the roots where they do the surgery in Australia. If we get this far, this will be a really long hard road, but we are determined for this to work and for us to get the best for our son if the surgery suits him. We are still in the investigation stage, getting all the info ready to send over.
Thanks for all your input newmom xxx

How old are your twins? Mine are 3 now. Peter has CP diplegia and his left side is affected more than his right. He can walk independly but only a few feet. His balance is getting better. He mainly walks with a walker now(Thank God); it took forever to get him to use his walker. Peter has gotten botox also and Nov. will be his 4th time this year(done quarterly).

How old are your twins? Mine are 3 now. Peter has CP diplegia and his left side is affected more than his right. He can walk independly but only a few feet. His balance is getting better. He mainly walks with a walker now(Thank God); it took forever to get him to use his walker. Peter has gotten botox also and Nov. will be his 4th time this year(done quarterly).

My twin boys are now 6. My son is similar in walking ability to yours, although he is now able to walk long distances ie 50 to 100m independantly but pretty unsteady and with maximum effort and nothing in his way!. Has been doing this since about the age of 3. We are now supposed to be getting botox every 3 months too, but by the time they sort it out it is roughly 5 months which is a real pain, as it wears off very quickly in my son.
We have problems with walking at home for some reason (maybe because the space is small, but my son prefers to get around by high kneeling at home even though at school they walk him everywhere by himself or else he often takes off on another childs walker! We have borrowed a walker to take home for the holidays but he is not in a habit of using it at home so is on his knees mostly at home which is not very good for his knees!)

Just curious, is he able to try quad sticks around the home if it is a small space?

Just curious, is he able to try quad sticks around the home if it is a small space?


Funny you should ask, we have just recently thought about this so they tried them at school (at conductive education) - my son doesnt use his right arm so could only try one stick with his left hand. The teachers all cracked up because he started walking down the hall by himself holding the stick in the air saying "look everyone, I am walking with my stick!!!" So it is like he is so used to the routine of walking by himself at school (also it is wide open spaces mostly) that he automatically has the confidence to walk by himself at school without sticks, yet at home, routine has been to get around high-kneeling, and also because he has no shoes or AFOS on at home mostly so not as much stability. We are exploring this option and trying to get him used to walking in bare feet at school with the stick and then will try it at home. Bit difficult cos he is really triplegic as such, only use of one hand! A difficult situation!! Who knows, good things take time!