Seeking Information on Cerebral Palsy

Updated on March 13, 2008
L.M. asks from Moorefield, WV
8 answers

I would like to meet parents of children with cerebral palsy and who have had preemies. I had my son when I was 29 1/2 wks, and he spent 57 days in the nicu,he is healthy 6yr old now. Just would like to talk about it and maybe comfort some other parent who maybe going through it.

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answers from Washington DC on

Hi. My name is M., I am 33 and have cerebral palsy. I am lucky in that I have a mild case. The only way that people can tell that I have an issue is when I'm tired and begin to limp. That's not to say that I don't have issues - my left side is weaker than my right - but to the unknowing person I am normal. To me that is a very important point. My Mom had a friend who was pregnant and was told by one of the amnio tests that her baby would likely have cerebral palsy.She was a wreck. My Mom told her my story and she was shocked. She had known me for awhile and had no clue. Luckily her child was born physically normal.

My twin and I were born 6 weeks early at the Corpus Christi Naval Hospital. They had just started a nicu and we were the first patients.

The official web site for the United Cerebral Palsy Organization is pretty good. (

I hope this helps.



answers from Washington DC on

Iam the grandmother of a 17 yr male that has CP, he has been in my home since birth , as we say a late xmas gift , unexpected gift on december 27, Kevin was born ,, he is the son of my daughter , he was born weighing in at 5 lbs, Dr's say full term,,, If you noticed I said Unexpected gift, my daughter was 18yrs , she had been raped, and without any knowledge of being pregnant , no signs of body being pregnant , meaning she weighed 100 lbs, striaght up and down, but on Dec 27th she took sick , with pain, that became constant , well to the hospital she went and they examined her couldn't find anything , then they said well lets do a exam , surprise surprise, she was told she was about to give birth , well needless to say she went crazy, told the Dr's and Nurses to call social services because she didn't want the baby at that time she used the phrase ( IT ) she told them what had happened to her , needless to say she gave birth to a little baby boy, in the hospital she on 1 side of the room and the baby on the other side , she refused to hold him , look at him , she was on the brink of having a break down, well her dad and myself was there and we all was in shock, because of the fact she was living at home and there was not 1 sign of being pregnant , well the Dr's said the reason for that was that she had loss her son's father too death , he was murdered in december 1989 and she had just given birth to a son , and at the time she was 17,and mentally she was just out there , couldnt function because her son was just 3 months old when his father was killed, so the Dr's said with all that going on with her , her body mentally and physically didn't accept the pregnancy so her body didn't go through the changes for her to know, Anyway there lied this little baby boy in his little crib in the hospital room, remind you she hadn't looked at him or held him, she was crying , at the time I had not looked at the baby either , just trying to deal with it and console my daughter , well I got the courage to look at the little baby boy , after that there was no way that I could walk away or leave that innocent baby for social services to have , my daughter still hysterical, saying what am I gonna do with another baby , her dad and I said what ever you decide we are there for you , well she came home the next day , the baby boy stayed in hospital for about 5 days , she did go to hospital at his feedings and she fed him, at the same time tears running down her face, well we made room for the little baby boy that was named Kevin , my daughter noticed some things she thought was different with Kevin, I asked her why did she say that she said because Kevin doesnt do things that Kenny did when he was that age, we noticed after his feeding his tummy would kinda swell and take a while before it would go down, and she said he wasn't playful like Kenny was, so I said well call the DR and make an appointment , well all kinds of test was done, came back he had a problem with his spleen,, that was corrected , then more test was done well the word CP came out of the Dr's mouth along with mental retardation, and you just can't imagine hearing all that, well we heard it all, and Kevin was taken back for more and more tests, well kevin couldn't sit up , if you sat him up he would roll over , his body was a little stiff, well he went though Doctors offices many many times, well when kevin was born, my husband was still military , we got orders to go to Rock Island IL , we had been told that Iowa was the best place for medical and the school was better than on the Illinois side ,,,, ok we got housing in Iowa , took kevin to the hospital Iowa university , the best, we was introduced to united cerbral palsy, kevin would go on saturdays twice a month for a little class , one on one , he was 2 yrs old , then he had a teacher come into the home 2 times a week, once kevin turned 4 the teacher asked if we would like kevin to be around other children, we welcomed that, so kevin went to 1/2 day kindergarten , and he loved it , kevin didn't walk or talk ,,, and today he doesn't walk or talk , he makes enough sounds and noise for a person to think there is more than 1 kid in the house , and ke now crawls allover the place , up and down the stairs, he was introudued to physical therapy and occupational therapy, kevin is in school today , regualr high school just in a special class with others that have CP OR some other form of disability ,, he continues to go to Dr appointments, hes a happy young man, even though he doesnt walk or talk, Our kevin gets around, he smiles and does so many things , that may be little to some people but kevin has come though hoops in our eyes , so if he doesn't ever speak or walk , he has come though and made all kinds of improvements that we can see even if he just grab at his teacher thats an accomplishment , these children are so special in their own little way, he continues to progress and go to drs ,for braces , dental, whatever is needed he is provided, and we are so glad that kevin wasn't left in the hospital, don't get me wrong it's not easy at all caring for those special children , they take alot of time, patience and LOVE, with Kevin he does have seizures , hes on medication for them, so sometimes he will miss school, seizures have gotten better in the yrs , he does have a pump placed in side of his tummy area, he has had botox injections , thats for the stiffness, so many things are out there for the children,, so kevin has a brother that is 18 that will graduate from high school and hes been a big hlep with his brother since he was a little boy , he now takes his brother to the barber shop, he bathes him, he changes him since hes in diapers, and Kevin also has a sister that is 15, when she was younger she called kevin her little baby brother , we thought that was funny, kevin of course is on the small side compared to the average kid in his age range, hes about 80 lbs now , long and skinny, where as his brother is 160 lbs and wears a sz 11 shoe kevin wears a size 4 in kids,,, no hand me downs ! LOL , needless to say , so much is offerd to our special need children , it's even better when you can talk with other parents and share info , it helps a lot, well I hope I didn't take up too much time, but I wanted to share about Our Kevin,



answers from Norfolk on

Go to and type in the search area- type in cerebral palsy. They have a doctor on this site that you can email him with questions and he will email you back.
Hope this helps. If you have a problem with the web site email me back and I will help you find what you need.



answers from Washington DC on

My daughter has cp. It's brain injury. Visit the website to learn how you can make her well, yes well. You (or whomever her caregivers are) will have to work very hard but it can be done. IAHP has a book available called What to Do about Your Brain Injured Child and it's the place to start. You can attend courses at IAHP in Philadelphia on developing your own program to do with her or you can have her evaluated by them and they can develop a program for her. They are wonderful people and can help you perform miracles. Whatever you decide to do the most important thing is to never underestimate her intelligence. My daughter with CP may not look like it but she's a certifiable genius.



answers from Washington DC on

I have TONS of information on CP as I am a pediatric Occupational Therapist and have frequently worked with children who have CP. If you have specific questions feel free to send them my way!! I noticed someone already recommended the United Cerebral Palsy organization (UCP) website there should also be a state branch of the UCP for most states. These offer great resources to family. Again please let me know if you have any specific questions. B.



answers from Washington DC on

Did you happen to see the Today Show this morning (Tuesday)? There was an interesting story on the use of stem cell transfusion in a young boy with CP - he has had an amazing response to it.


answers from Allentown on

Hi L.,

Have you called the Children's Hospital of the King's Daughter's in Norfolk about a CP group? Good luck.




answers from Washington DC on

HI L.,

My son also has CP, he also came at 29 weeks. Daniel weighed 2.6 lbs when he arrived. I would be happy to answer questions, or any concerns you may have. Daniel has a mild case of CP (spastic dieplegic) He did not walk until he was 6 years old. He is 17 now goes to public school weighs 180 lbs... they catch up. My only question now is." Where do we get therepy for our kids that is kid frienldy and familar with CP after 5 PM ? I also live in Stafford. I would be happy to meet and talk, he has had many procedures at Kennedy Kreiger.

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