Discussions that mention botox

Cerebral Palsy board


Hi, I'm new to this site, but encouraged about the many people on it that can relate. My daughter Holly is 6 (but will be 7 next week). She was a 26 wk preemie and was diagnosed with CP at 3 yrs after unsuccessful PT. Her doctor says it is so mild, only appearing to affect her left foot, yet this last year she has been having alot of cramping in her right foot (they said due to overcompensation). Now cramping is in both feet, all of the time. Massage offers no relief, doctor suggested soaking her feet in ice water. This only helps sometimes. Doctors now are suggesting either botox injection in left foot to help strengthen weak muscles, along with a brace and PT or surgery to move muscles around in her left foot. Not sure yet what this all means long term. Wondering if anybody knows if these are the most common treatments or are there others? I really need some encouragement. thanks! :)
Soaking in ice water????that seems like something that would make her spasticity even worse thus the cramping...
I think that botox and brace is so temporary. Of course, it works differently for every child, but most of all kids dont get long term benefits.
What kind of muscle transfer is the doctor offering? I know a lot of hemi kids are hiving muscle transfer surgery along with PERC surgery performed by Dr Nuzzo with great results. PERC is usually done if muscles in her leg/foot are shortened and causes toe walking, which i assume is the case if they want to do botox and brace.
Hi -

My son is a 27 week preemie and is now 21 years old. His diagnosis in Spastic Diplegia, with his left leg being most affected. He could not walk alone and used a Kaye Posture Walker until he had Selective Dorsal rhizotomy surgery at age 5 by Dr. Nazar in Louisville, KY. After a year of PT, he was able to walk alone for the first time when he was almost 6 years old.

As a teen, his gait was becoming crouched due to growth and he was seen at Cook Children's hospital in Ft. Worth. At their recommendation, he saw Dr. Dan Sucato at Scottish Rite Hospital in Dallas (we lived in TX then) for the tendon lengthening procedure. We were really pleased be the care and service our son received there.

Our son has taken Baclofen for several years and never had Botox. He has been in PT most of his life since he was 18 months old and continues weekly PT.

If your child is a candidate for the Selective Dorsal Rhizotomy surgery, please check into that before any orthopedic surgery is done.

Wishing you well - Barbara
MALWM01,
I was just re-reading what you said about you having cramping almost all of the time...our doctor is eluding to us that either the botox or orthopedic surgery will relieve the cramping. Wondering what your thoughts are on this? My daughter, was woken up last night with her feet hurting her to tears. I guess we're still looking for any kind of proof that any kind of procedure will give her relief. thanks.
I read up on Dr. Nuzzo's website...also we had another dr. appt with a Neurologist this time. We'd been seeing an orthopedist dr at Scottish Rites, now they wanted us to see this doctor who also specializes in botox. He still couldn't identify why my daughter is having pains in both feet. She actually clarified to him that it was central in the toes of both feet. He is hoping that by treating the muscles in her foot, that the pain will subside, if not I been thinking myself whether it could be back related. Anyway, this doctor said they want to try to put off the muscle transfer as long as they can to prevent having to redo the surgery later. They felt that by doing the botox and then bracing her left leg, they will get enough improvement to delay surgery. After reading Dr. Nuzzo's website, I think we're confident that the treatment she's getting at Scottish Rites is also good. Treatment scheduled for 5/4, will post after with how she's doing. thanks.