My son was diagnosed w/ cp last week. we were told to expect it because at birth fetal heart tones were lost and he was apenic. after cpr and being on a ventilator for 2 wks, we knew he would have problems. My question for all of you is what can I do at such an early age to maximize his potential as for as motor and cognitive skills? He is in pt,and ot 1 time a week, but we work on his stretches at home every night. He also has a G-tube, he cant seem to suck and swallow at the same time. Any pointers on raising an infant with cp will be greatly appreciated. thanks for your time.



Isaiah 65:18

7 weeks old for a CP diagnosis is amazing! I was 5 when they made my diagnosis. This was in 1955! I have had a lot of experience with kids and their CP, and I don't want to alarm you... As young as your son is, he will probably have a lot of difficulties dealing with his CP and its side affects, just because of his very young age. On the other hand, his young age might allow him to make great strides in his development reguardless of the CP. Keep doing what you are doing now. Hopefully your doctors will guide you, as your sons needs change and he developes.

All my best to you!

Thank you for your reply and encouragement. My family and I appreciate it.

That is very early to make a DX. My son had trouble before/during delivery and stopped breathing. We were told that he may have CP but would need to wait and see. He is now 4 and has mixed CP but it is not a death sentence for him. He is VERY smart, can use a walker to get around, speaks in sentences (is somewhat unclear though) got his feeding tube out at age 2 1/2 and is just a super kid! If your son is able to eat some by mouth, I would recommend seeing a feeding therapist. At first, my son couldn't eat by mouth but after a swallow study showed that he was not aspirating, we started with oral feeds. It was a slow process. We went to a feeding program for 8 weeks to work on this and 1 a week visit for about a year after that. It may sound strange, but you may even want to see a speech therapist in the near future. One final thing. ENJOY your child! I spent a long time mourning over the lose of my healthy child that I almost missed out on the important things. Let me know if you have any other questions!
:wave:

I was 2 pounds 8 ounces at birth. 2 months premature. I was put in an incubator that contained pure oxygen, and they told my parents that if I lived for 24 hours, I would probably be ok. It was the oxygen that got me. I was lucky not to have the speech and swallowing difficulties your sweet children have, but if you continue the physical thearapy and training along with love and nurturing, your children will flourish :)

thank you both for your replies. I know 7wks sounds so early for a diagnosis, but he has so many signs of cp, that I knew before the doctor confirmed it. I work in the medical field and see so many parents with severly handicapped kids, and I always wondered where they got the strength to cope with day to day stuff. I always thought I could never be as strong as they are. Thats my one fear, that Im not strong enough to deal with the everyday stressors. I have let go of all anger already, and there is no one to blame, Im just very thankful that my son is alive. I will love him as he is for as long as I have him.
At what age can I get a swallow study done? He has no desire to have anything in his mouth, we have tried pacifiers, our fingers, his fingers... All he does is clamp down, or thrust his tounge foward to push a pacificer out, or he will turn his head and push us away. I am wondering if this is because for 3 weeks or more he either had a vent in his throat, or a feeding tube. He has never had a pleasurable experience with something in his mouth. the OT says I have to try and let him mouth objects, and even force him if I have to. That sounds mean. Any experience with this? He also blows bubbles with his spit all the time, Is this something all babies do, or is it cp related?
Thank you in advance for helping me out. parenting is new to me,as is having a child with cp, I have so many questions. Im glad I have found you all to help answer them.

:angel:

Joseph had his first swallow study done at 3 or 4 months of age. He started to become interested in sucking so we had it done. He lost his suck again at about 7 months of age. Apparently he didn't associate sucking with eating. That happens to a lot of CP babies. Have you tried facial massages? That may help he overcome his aversion. A lot of kids who were vented or had tubes have this. Can you blame them? There are vibrator mitts out there that help this as well. [ removed ]

Thanks for the info and advice. I talked to the speech therapist today and she said she will start working with Mark as long as his doctor will write the order. I dont think I will have a problem getting one.

I have a 17 mo old granddaughter with cp that she got after birth.When she was 5 mos old when the step grandpa of the baby's daddy(their not married)fell a sleep drunk and decided to cook.Well when he woke up the trailer(hate trailers cause of fires)was in smoke and the kitchen was in flames,he tired to put the fire out himself but the smoke consumed him,meanwhile my granddaughter was a sleep with her grandma unaware of the fire.The family dog barked until neighbors called 911 by the time 911 got there the dog had passed.The firefighters found all 3 of them on the floor and had to cpr all of them back to life,and again on the way to the hospital.My granddaughter was on life support and we had to disconnect life support she was suppose to pass within 4 hours(of course they didnt tell us this til later)but she didnt she showed then all what a strong little girl she could be.She was not burned thank god but she lost oxygen for 20 mins to her brain and was dignos. with cp.She was in the hospital a month in a coma and got to come home Jun 17 2003 fire was May 17 2003 she had a feeding tube and was very weak Igave up my job of 18yrs to care for her(lucky I had a retired firefighter for a bf)and we devoted all to her.She now eats with a spoon and a bottle and sometimes a coffee cup lol.We have given her nothing but LOVE and FAITH from above and the dr's say whatever your doing keep doing it.Oh I forgot to mention all the meds she was on when she came home now she is on NONE but we still have a long road ahead she doesnt walk or crawl yet but hey were working on it !!!!!Ty and just remember love holds the key to EVERYTHING.

My son is about 23 months old and he was diagnosed 14 months old. I would highly recommend feeding therapy. My son started at 11 months old and graduated about 5 months once a week. She trained his month to do the movements we use to chew. When I think about it is amazing, and know he can eat all sorts of food. We have a huge amount of muscles in our mouth that it takes to chew or swallow. I am very happy for you because of knowing so early, that might make all the difference. Use all the therapies you can and research things on your own also. God bless you

Thanks for your reply. We have started speech therapy to work on getting rid of his oral aversion. The next big goal is to be able to eat cereal or baby food. If he never sucks a bottle its ok with me, I just want him to experience all of the wonderful tastes in the world.