Discussions that mention botox

Cerebral Palsy board


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

[QUOTE=nwmom;3205794]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
[QUOTE=nwmom;3222853]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
[QUOTE=batty;3227058]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).
[QUOTE=open_the_door;3227423]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!)