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    Old 11-01-2008, 10:28 AM   #1
    open_the_door
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    questions for older CPers

    My son is 4 years old and has cerebral palsy diplegia. At the moment, he wears AFO's during the day. I let him walk around the house with his sandels on, so he can strengthen the calve muscles because he is so fixed wearing the AFO's(they don't have a hinge yet, and they go up almost to his knees). At night, he wears night boots (casts that you can remove that go to the knees), and he also wears knee immoblizers. We are doing all of these things so his muscles get stretched. He gets botox every three months in his hamstrings(no serial casting yet done). My question is, will he always have to wear some type of AFO, or shoe insert. How many of you older CPers have to do this still. He doesn't have rock bottom feet yet, and that is why we are staying on top of all of his stretches, and wearing his different orthotics. There are so many more questions, but I know it varies from person to person because CP affects people in different ways, and then again, the same way.

    Thank you for reading

     
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    Old 12-02-2008, 12:41 AM   #2
    sacrelli
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    Re: questions for older CPers

    Quote:
    Originally Posted by open_the_door View Post
    My son is 4 years old and has cerebral palsy diplegia. At the moment, he wears AFO's during the day. I let him walk around the house with his sandels on, so he can strengthen the calve muscles because he is so fixed wearing the AFO's(they don't have a hinge yet, and they go up almost to his knees). At night, he wears night boots (casts that you can remove that go to the knees), and he also wears knee immoblizers. We are doing all of these things so his muscles get stretched. He gets botox every three months in his hamstrings(no serial casting yet done). My question is, will he always have to wear some type of AFO, or shoe insert. How many of you older CPers have to do this still. He doesn't have rock bottom feet yet, and that is why we are staying on top of all of his stretches, and wearing his different orthotics. There are so many more questions, but I know it varies from person to person because CP affects people in different ways, and then again, the same way.

    Thank you for reading

    Hi,
    I am 18 years old. I am still in high school. I still wear my leg braces today (knee high). Growing up they switched from time to time. I also used a walker and crutches off and on until I was about 8. I had many surgeries. Not knowing exactly how your son and I differ I can't give you an exact answer. Let me just say that my doctors always told me that when I was 18 I could make the decision to keep them on or take them off (when I was fully grown). Recently, I had a short conversation with my doctor about this and I have chosen to just continue wearing them. I am just so use to them that I don't want to take them off. Sure, at night I take them off and walk without them but during the day I am much more comfortable with them on. My opinion would be to leave the braces on as long as you can. I remember being a kid and hating them, sometimes I was upset but my mom always made it clear how important it was for me to wear them as much as possible. You're kid will probably really want them off (especially at a young age). Evenually he will reach the age where he can make his own decision. Let me just say that as a kid w/ the leg braces the only thing I couldn't do was play organized sports but my father and I always threw around the baseball, shot basketballs and threw the football around. Wearing the leg braces wont stop your son from doing anything he desires. They are only good for him. I remember when my brother came home when I was 9 with his drivers license and I thought to myself. "Man, I hope I will be able to do that." When I was 16 I got my license while still wearing leg braces and I don't use any hand controls or special adaptions. Any other questions you have about growing up with CP, I will be happy to answer.

    Last edited by sacrelli; 12-02-2008 at 12:42 AM.

     
    Old 12-03-2008, 09:40 PM   #3
    Malwm01
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    Re: questions for older CPers

    Quote:
    Originally Posted by open_the_door View Post
    My son is 4 years old and has cerebral palsy diplegia. At the moment, he wears AFO's during the day. I let him walk around the house with his sandels on, so he can strengthen the calve muscles because he is so fixed wearing the AFO's(they don't have a hinge yet, and they go up almost to his knees). At night, he wears night boots (casts that you can remove that go to the knees), and he also wears knee immoblizers. We are doing all of these things so his muscles get stretched. He gets botox every three months in his hamstrings(no serial casting yet done). My question is, will he always have to wear some type of AFO, or shoe insert. How many of you older CPers have to do this still. He doesn't have rock bottom feet yet, and that is why we are staying on top of all of his stretches, and wearing his different orthotics. There are so many more questions, but I know it varies from person to person because CP affects people in different ways, and then again, the same way.

    Thank you for reading
    I only ever wore hinged AFOs for 4 or 5 years when I was a kid. The worst part about wearing them was that I couldn't ever get cute girlie shoes, but I'm figuring your son won't have to deal with that Otherwise I liked them and had no problem wearing them. They were comfortable to me.

    Looking back I wish that they would have kept me in braces longer, shoes alone always hurt my feet and still hurt my feet as a 25 year old. Pretty much the only things I can wear are Crocs, and occasionally Earth shoes but even after a few days the Earth shoes start to become really painful. I go shoeless as much as possible.

    I know other people who also agree that their feet hurt without braces but I also know many more people that couldn't wait to rid themselves of them. It just depends on the person, I guess. It also seemed to be that those that thought their feet hurt without braces were always told they didn't have to wear them after a certain age but those that weren't ever told that always hated them.

     
    Old 12-04-2008, 10:25 PM   #4
    open_the_door
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    Re: questions for older CPers

    Quote:
    Originally Posted by sacrelli View Post
    Hi,
    I am 18 years old. I am still in high school. I still wear my leg braces today (knee high). Growing up they switched from time to time. I also used a walker and crutches off and on until I was about 8. I had many surgeries. Not knowing exactly how your son and I differ I can't give you an exact answer. Let me just say that my doctors always told me that when I was 18 I could make the decision to keep them on or take them off (when I was fully grown). Recently, I had a short conversation with my doctor about this and I have chosen to just continue wearing them. I am just so use to them that I don't want to take them off. Sure, at night I take them off and walk without them but during the day I am much more comfortable with them on. My opinion would be to leave the braces on as long as you can. I remember being a kid and hating them, sometimes I was upset but my mom always made it clear how important it was for me to wear them as much as possible. You're kid will probably really want them off (especially at a young age). Evenually he will reach the age where he can make his own decision. Let me just say that as a kid w/ the leg braces the only thing I couldn't do was play organized sports but my father and I always threw around the baseball, shot basketballs and threw the football around. Wearing the leg braces wont stop your son from doing anything he desires. They are only good for him. I remember when my brother came home when I was 9 with his drivers license and I thought to myself. "Man, I hope I will be able to do that." When I was 16 I got my license while still wearing leg braces and I don't use any hand controls or special adaptions. Any other questions you have about growing up with CP, I will be happy to answer.
    Thank you so much for your long answer. I appreciate it so very much. You sound like a fine young man. Thank you for your time. You make all the difference....

     
    Old 06-17-2009, 07:39 AM   #5
    mom2cpkid
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    Re: questions for older CPers

    My son wears AFO'S and he is 14yrs old.He has cp and is in a wheelchair.I would say keep up with what you are doing.Its not pretty if the muscles get tight.My son as well use to get the botox and then some years later had surgery.Its going to vary child to child on the braces.My son started wearing them at the age of 2yrs and now 14yrs.good luck and i hope this help some.

     
    Old 06-19-2009, 06:29 PM   #6
    nwmom
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    Re: questions for older CPers

    I was told by Noah's PT that he'll always wear some type of brace or orthodics on his left foot because his it pronates so much.

     
    Old 08-04-2009, 09:09 PM   #7
    rauljoni
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    Smile Re: questions for older CPers

    I wore AFO's very young then when I was a teenager it was my decision to continue or not. I chose not to which was a bad mistake. My ankle started to get deformed. Still at 40, my ankle has slowly gotten worse. If I were you, I would always have him wear one. AFO's are ugly and sometimes hurt but ths decson might effect his future. You never know if not using one, would make it worse. Never stop physical therapy.

     
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