help - Cerebral Palsy Message Board

jojo1966 · 09-20-2006, 12:32 PM

I have a question for anyone that can help with an answer, my daughter is 10yo and whenever she visits the doctors office, he always tells me that i am doing a good job and that (and i quote) a child like her usually doesn't live very long, that is not something that i want to hear everytime i visit the doctors office, but it has really gotten me wondering what is the life expectancy for a child with cerebral palsy, she does not walk or talk, she can not sit or stand however other than that she is in good physical condition, she has not been hospitalized for phemonia (?) or any other type of illness but i have been so concerned over the last couple of weeks about her life expectancy more so than ever......anyone please.....be honest with me

skigirl1689 · 09-20-2006, 01:57 PM

usually people with cp have normal life expectanties from what I have heard. Plus your daughter sounds like she doesn't have major lung problems so I don't see why her doctor keeps telling you that children like her don't live very long. I'd ask her doctor why he keeps saying that and if he doesn't give you an honest answer, I'd find another doctor who will tell you the truth.

Malwm01 · 09-20-2006, 10:50 PM

I agree with Becca... everything she said is true... CP doesn't affect how long you live. I would confront the Dr and figure out why he keeps saying that.

It's certainly something that would make ME crazy

if I had to keep hearing that over and over.

Good luck, and it's good to hear that your daughter IS healthy and doing well

focus on that.

Edited to say, I remember reading a story in middle school about a really old guy with CP named Petey. And then there is Bill Porter, have you heard of him? Barabra Walters did some interviews with him, back a few years ago, he's an old door to door salesman from the Pacific Northwest. I There was even a movie made about him on TBS, with William H. Macy (who does an AWESOME job playing Bill Porter!) it's called "Door to Door" and I think it's even out on DVD. So, there are two examples of people who lived totally different lives and had very different abilities (Petey was as you described your daughter and Bill Porter could walk and talk.) who both lived long lives.

Steffers2318 · 09-21-2006, 06:47 AM

Maybe the reason he's saying that is, I think being pretty much stationary all the time is bad over the long run because respritory muscles get weak and stuff like that. However, I don't know what your doctor considers a "very long" time to live

I agree it's best to just ask straight out exactly why he says that.

rhales199 · 10-02-2006, 10:48 PM

Quote:

Originally Posted by jojo1966

I have a question for anyone that can help with an answer, my daughter is 10yo and whenever she visits the doctors office, he always tells me that i am doing a good job and that (and i quote) a child like her usually doesn't live very long, that is not something that i want to hear everytime i visit the doctors office, but it has really gotten me wondering what is the life expectancy for a child with cerebral palsy, she does not walk or talk, she can not sit or stand however other than that she is in good physical condition, she has not been hospitalized for phemonia (?) or any other type of illness but i have been so concerned over the last couple of weeks about her life expectancy more so than ever......anyone please.....be honest with me

Honestly, i don't know the life span of a person with her exact challenges. However, I know many people with CP who have lived into their thirties (my hubby is thirty- two, including several whose impairments are similar to your daughters'.
Also, i had a client (i'm a home care provider) who had CP (it was 'mild') who is 68 years old!
I might be wrong here, but I don't believe not being able to walk or talk really affects a person's life span. I think as long as she doesn't have breathing issues and remains healthy, she would be able to live well into adutlhood.
I would ask the Dr. why he always says this, and possibly make him aware of how it makes you feel to hear something like this. If all else fails, find another dr. if possible. no one should have to be told that if it's unneccesary.
Becky