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

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.

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. :rolleyes: It's certainly something that would make ME crazy :dizzy: 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.

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.

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

CP doesn't usually affect longevity. Is this doctor of yours a GP? You need to talk to someone who knows a lot about CP. Does you state health department have a division that follows children with special health needs? They should have people there who know more. At the very least, get a second opinion. Good luck.

just thought l,d let you know about my brother ,,, he is 37 ,, and we were told that he wouldnt live to see his 1st birthday then it was 3 followed by 5 ,, then 10 , 15 ,, they gave up at 21 ,, he has some problems ,, but still going strong ,,, just enjoy , as l find my brother gives me plenty of that , cp kids are a strong bunch ,, there fighters , we can learn so much from them

firstly i dont want to worry you when i was in your situation i asked what my daughters life expectancy was when she was 2yrs my consultant said roughly 40yrs but it does depend on how well a child is eg has lots of chest infections etc my daughter got phemonia in 97 when she was 8yrs
we wernt given a good picture the worse you can have yet she recoverd we were living on a knifes edge waiting foe that worse day to come
that day came 2yrs later in 99 she was age 10yrs the phemonia came back again
im sorry if this upsets any1 i just want to be honest as ive been there and know what its like firsthand
hugs to you xx

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
Hi,

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
Hi,
My son has CP (spastic quad) he is in a wheelchair and also doesnt speak, he does use a communiication device, when he was an infant, they said his life expectancy was 10 - 12, because of the scoliosis, kids with CP get, and the upper respitory problems. Today he is a happy 14 year old enjoying the 9th grade, mainstreamed into learining supposrt classes.He only has the slightest scoliosis, nothing to be concerned about. I
I would just keep on doing what your doing, and if you cant trust your doctor,or talk openly with him, I would consider finding a new one.
I hope this helps.
Take care

well the doctor you are seeing must be miseducated because out of the 100's of web sites and books and out of all the doctors i have seen have never said anything about short life spans for people with cp unless there are significant health issues. as far as all the information i have encountered people with cerebral palsy live long normal lives just like any other healthy person. so i would look into changing doctors and confronting your current doctor for misinforming you about your daughters life. that is so not right for your doctor to upset you expecially with the wrong information sorry to hear it.