Grandson 4 years old w CP - Cerebral Palsy Message Board

eyesofblue · 06-29-2004, 03:14 PM

My little grandson was born extremely prematurely and now suffers with CP. Thankfully everything else with his brain, vision and motor skills are fine. He has mild CP and has a slight walk defect and walks on his toes. The right foot seems to be effected more that the left however, he does walk on the left toes of his foot also.

He has worn braces since he was walking and now has his 4th set of braces. It seems as though the braces gives him a little more stability and balance with his walking but once the braces are taken off, he continues to walk on his toes. He never walks with his foot down when the braces are off. The braces don't seem to correct anything or make his toe walking any better at all.

I've been told that the CP condition never really gets any worse than what it is now but the toe walking is really a huge problem for him, now at age 4. His balance is really horrible and he falls very often.

Does anyone know of something that can be done to assist him or any type of correction to the CP problem with his walking? I've read about the tendon lengthening and spoken with an orthopedic surgeon. Seems as though it is way too early to start to think about that.

What type of physical therapy would help him or any other medical therapy or surgery?

Any suggestions, comments or advice welcome. Thank you.

OrbOfConfusion · 06-30-2004, 06:27 AM

Hi eyesofblue,

I don't know anything about braces because my daughter's cp is on her right side and walks pretty good, or so I think. I would definitely suggest Shriner's hospital if he hasn't already been. And also any early intervention school program in your area would be good for him.

My daughter (2 1/2 y.o.) does walk on her toes on her right foot. Shriner's mentioned possible surgeries on her heel cord and hamstring, but if she does need it will be in a few years. I think it is too early too worry about surgery at this point.

Sorry I don't have very much useful info for you. I wish the best for you and your grandson.

Take care,
Melissa

Zagreus · 06-30-2004, 11:59 AM

Physiscal and occupational therapy are essential. He should be receiving that in addition to wearing the braces. My son just had tendon lengthening surgery as he turned 10. Because of PT and Botox therapy (Botox paralyzes the muscle so that it can't resist the stretching of PT and thus improves results) we were able to delay his surgery. Thus far the results are wonderful. There's a possiblity that he may not a brace. We'll know better Friday.
The Shriners are a definite possibility. If your insurance doesn't cover PT and OT, get with a social worker and start identifying possible resources for therapy.
God bless you!

musicmaker650 · 06-30-2004, 01:26 PM

While braces may be a benefit while his bones and muscles are growing, let me tell you from personal experience, they are NOT a tool that should be used for long. Physical thearpy and the use of Botox and other methods are necessary. Tendon lengthing, and muscle relocation surgeries are very common and sometimes essential too. I had 9 surgeries before I was 14. I walk using no braces, 2 canes and I'm no stranger to a wheelchair. With 9 surgeries, you learn to be very good in a wheelchair

sassysweetie · 07-01-2004, 10:24 AM

I wore AFO's for nearly 10 years to straighten my foot. musicmaker is correct...After a long period of time, you get used to them, but to go without it for a few days and then to have to get back in was quite painful. Many times I cried.

I started puberty and such quite young, and was considered mature by the age of 10 and 1/2. However, tendon-lengthening and such is in my future somewhere, whether it be the near or distant future.

I received PT and OT for many years and then the formal sessions abruptly stopped for whatever reason. However, my mother works in a rehabilitation center and is an occupational therapist who also works with PT's on brain injury victims, so I'm in luck. I have continued at home for the past five/six years.
Best of luck!