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Old 11-17-2003, 11:10 PM   #1
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Join Date: Nov 2003
Location: Idaho
Posts: 24
alinch HB User
16 months old with CP

For anyone that would like to know some info or anyone that has some info....
Sept 30th 2003 my son was diagnosed with CP. He was about 14 months old. Now that I have some of the missing puzzle peices because of the diagnosis I can understand more about the first year of his life. From the first days in the hospital... I was having trouble feeding him. He was bottle fed and he would suck and suck but the bottle would still be full. After a couple days we figured out a way to insert the bottle and he would eat. Now researching CP I found that trouble sucking is a first sign of CP. He was such a good baby. What I thought was good, however now I know that he just didn't know how to start to get around. He was about 2 months late holding up his head, but people and docs said that kids do things a different times. He didn't sit up until 10 months old and was very unsteady, but again people and docs either thought that he just wasn't ready or that we just never made him. Also his thumbs were always tucked into his fists. I kept wondering when I would be able to use the finds thumbs sticker on his baby calander. I would ask his ped doc at all the wellness checks and he would say just give him some more months he is progressing. At 11 months I took him back to the doc and said I am concerned about his development. The doc had me call my local child development center. We then started to do OT and feeding therapy. At 11 months old he was still on #2 baby food and couldn't crawl. About 1 month later I decieded to get a second opinion. This ped doc offered me and MRI for him. That was giving about another month later. The next day we were taken into the office and informed that he had CP. BAM........I knew that it was possible but of course every parent is hoping for the possibility that he was just had developmental delay. So on one hand we now had a medical reason, on the other hand we had a medical condition. We then began PT therapy. I was angry that I wasn't able to know earlier so we could have had even earlier intervention then we did. At about 15 months he was crawling well, but knowing that he has CP I can spot differences in his crawling. Not that I'm looking for odd things, just sharing signs I can see. 2 weeks ago he began to ride on a scooter that we gave him on his first birthday. What a great day, he moved his feet and then again and again. He does have trouble when his shoes are on but that will take practice because of the added weight. With feeding we are able to eat gram crackers with peanut butter (for protien, he can't quite do meat yet for some reason) yogurt, pasta, some breads and some cerals, certian fruits and vegies. I have tried a lot of foods. About his thumbs they are pretty much still tucked in. We have gloves that help. Nonetheless, we still are unable to get the pincer grasp for self hand feeding. I have never shopped for more foods that come in a stick in my life. The PT brought up botox injections for his thumbs. So I have been trying to research it, I don't know so if anyone could help! He is feeding himself with a loaded fork or spoon placed in his hand. Arms seem to be functioning, trunk weak I believe, legs seem to be a little weak, but that could also come from the ankles. Thank you for letting me ramble on, I just really want some conversation with people going through the same situation. I am interrested in all sorts of therapy, including alternatives if anyone has research to share. And new ideas for teaching my child. Again Thank you

Last edited by alinch; 11-19-2003 at 10:31 PM.

 
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Old 11-18-2003, 07:15 AM   #2
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Join Date: Aug 2003
Location: Oklahoma
Posts: 1,048
Mommyof4 HB User
Thank you for your post. My 16 month old is going through diagnosis right now. He has trouble feeding and is still on baby food. He has a long health history with feeding issues and we were told by our therapist that he has spastic quadreplegia. He walks now but still has problems with fine motor movement and speech.

It has been a long road for us. We have been told by family that we are just looking for things that are wrong. I was actually told by a friend that I was spoiling him and needed to stop buying the baby food and just put table food in front of him "Baby's wont starve themselves"... They dont realize what it is like to have a child that chokes daily on foods like that.

Anyway, sorry to bore you with our story, I just wanted to let you know that you are not alone. I also want to applaud you for finding reason to celebrate no matter how small the accomplishment. Thanks again as I was feeling pretty lonely in my situation.
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Old 11-18-2003, 03:46 PM   #3
Junior Member
 
Join Date: Nov 2003
Location: Idaho
Posts: 24
alinch HB User
Thank you

Quote:
Originally Posted by Mommyof4
Thank you for your post. My 16 month old is going through diagnosis right now. He has trouble feeding and is still on baby food. He has a long health history with feeding issues and we were told by our therapist that he has spastic quadreplegia. He walks now but still has problems with fine motor movement and speech.

It has been a long road for us. We have been told by family that we are just looking for things that are wrong. I was actually told by a friend that I was spoiling him and needed to stop buying the baby food and just put table food in front of him "Baby's wont starve themselves"... They dont realize what it is like to have a child that chokes daily on foods like that.

Anyway, sorry to bore you with our story, I just wanted to let you know that you are not alone. I also want to applaud you for finding reason to celebrate no matter how small the accomplishment. Thanks again as I was feeling pretty lonely in my situation.

Thank you for writing back. You would never bore me with your story that is why I found this site was to be a part of all of us. I got the same response from people about spoiling and just put food down he want starve. But you are right about dealing with the choking everyday. Our feeding therapist stated that if you continue to push them where they aren't ready they could get a fear from it, like a fear from choking. When my son was cutting his eye teeth she suggested that we go back to some of the non-textured foods to avoid him from fearing choking again and regressing. I haven't recieved a answer for what type of CP my son has, I keep asking but they won't tell. When did your child start walking. I am so ready for my son to learn. He is just so fearful that not only do we have to worry about balance and strangth, but he also has sensory issues I am told. Do you have that situation? Again thank you for your reply, it is really great to share with someone that is right there with me.

 
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