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  • Possible CP in 10 month old preemie

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    Old 02-18-2004, 02:40 PM   #1
    angie75
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    Possible CP in 10 month old preemie

    Hi:

    Just wanted to introduce myself, and ask a few questions to any moms of kids w/CP out there. I am mom to a former 25-weeker, who is 10 months actual (just under 7 months adjusted). We are playing the waiting game right now, as he has "tone issues". They are not extreme, and his hand coordination is not bad. He has some high tone on his legs, trunk, and a little bit in his shoulders. We have a PT come once a week. He rolls from tummy to back, sits up a little bit unassisted (not 'straight' up), only rolls 1/2 way over from back to tummy. He cannot pick up his trunk to try to crawl.

    Our neuro has said that if he has CP, it 'should' be mild. We are supposed to have an mri in April. He had an IVH (brain bleed-grade 3) when he was born, so we have to check on that too. Our neuro said she should be able to tell us at 1 yr old if he has CP or not.

    My question: if he has mild CP, what am I looking at? I know he won't crawl or walk until later than other kids, but what else should I expect? The waiting is making me a little nutty, and I would really appreciate any information you can give.


    Angie

     
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    Old 02-18-2004, 03:52 PM   #2
    Mommyof4
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    Re: Possible CP in 10 month old preemie

    My son is 19 months old and has mild CP. He actually goes in for his 2nd MRI tomorrow morning. The first one showed excess mylenation in his frontal lobe. It affects his executive decision making. He was a late sitter, crawler, and walker. He has spastic quaraplegia which is a stiffness in all 4 extremeties. He also has Oral/Verbal Apraxia, dysphagia, and aphasia. All of those long words simply mean that he has speech and feeding issues!!LOL

    One thing about CP that I take heart in is that it will not get any worse. It takes awhile to figure out the scope of the problem but if your baby learns to walk, he will always walk. My son walks well but has a spastic plantar flex so he can't wear shoes. His toes curl down and won't straighten. He gets ST, OT, and PT twice weekly. He will go to a speech oriented preschool next year but the plan is to mainstream him into regular school later on.

    I don't know of any actual information I can give you other than our story. I hope that gave you hope. To the world, he looks like a normal happy, although very small, toddler
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    Old 02-18-2004, 10:58 PM   #3
    Strawberry1
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    Re: Possible CP in 10 month old preemie

    Quote:
    Originally Posted by angie75
    Hi:

    My question: if he has mild CP, what am I looking at? I know he won't crawl or walk until later than other kids, but what else should I expect? The waiting is making me a little nutty, and I would really appreciate any information you can give.
    Angie
    As every case of CP is unique, it's difficult to predict exactly; besides words "mild", "moderate" etc. are often used pretty subjectively and all people don't fit neatly into the categories mild/moderate/severe. But one definition of mild CP is that one is able to move independently, needs no help in daily activities and becomes an independent adult. People with mild CP usually don't have many additional disabilities besides mobility impairment, but epilepsy, dyslexia etc. can be present.

    I have a mild hemiplegia myself & am able to work in a physically non-demanding job. I've met some other people with a mild CP and they are all able to work. But every CP patient is unique, so in the end you just have to wait and see (sigh).

    Last edited by Strawberry1; 02-18-2004 at 11:19 PM.

     
    Old 02-19-2004, 06:04 AM   #4
    Zagreus
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    Re: Possible CP in 10 month old preemie

    Yes, every child is an individual and CP will produce a unique combination of symptoms in each. My son wears a brace on his left leg, but runs, plays basketball, bowls, hikes, etc. He has also somewhat impaired coordination of his left hand and arm. Thus he avoids art projects, etc and has trouble tying things and fastening clothing. With more effort than you or I might expend, he does these things.

    He is very apprehensive about balance issues.

    He also can't stand the smell of vinegar -- he has a strong physical response to it. Frankly, I think it's a symptom of his CP. I believe his reaction to olfactory stimuli is atypical. That could be, I feel, just as much a neurological symptom as any other.

    He's now nine years old, won third place in the citywide spelling bee, and is one of the brightest, gentlest children you could ever want to meet.

    If your child is diagnosed with CP, get therapy early and as often as you can. It will benefit the child immensely.

    Hope that's a little helpful. (From a Dad, by the way)

    Last edited by Zagreus; 02-19-2004 at 06:05 AM.

     
    Old 02-19-2004, 08:41 AM   #5
    angie75
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    Re: Possible CP in 10 month old preemie

    Quote:
    Originally Posted by Strawberry1
    As every case of CP is unique, it's difficult to predict exactly; besides words "mild", "moderate" etc. are often used pretty subjectively and all people don't fit neatly into the categories mild/moderate/severe. But one definition of mild CP is that one is able to move independently, needs no help in daily activities and becomes an independent adult. People with mild CP usually don't have many additional disabilities besides mobility impairment, but epilepsy, dyslexia etc. can be present.

    I have a mild hemiplegia myself & am able to work in a physically non-demanding job. I've met some other people with a mild CP and they are all able to work. But every CP patient is unique, so in the end you just have to wait and see (sigh).

    Any info helps. Waiting is getting really tiresone, as you might expect. As for as epilepsy goes, I have complex partial epilepsy, so Alex is already at a somewhat higher risk for that. It doesn't interfere w/my life too much though. Thanks for your info,

    Angie

     
    Old 02-19-2004, 08:45 AM   #6
    angie75
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    Re: Possible CP in 10 month old preemie

    Quote:
    Originally Posted by Zagreus
    Yes, every child is an individual and CP will produce a unique combination of symptoms in each. My son wears a brace on his left leg, but runs, plays basketball, bowls, hikes, etc. He has also somewhat impaired coordination of his left hand and arm. Thus he avoids art projects, etc and has trouble tying things and fastening clothing. With more effort than you or I might expend, he does these things.

    He is very apprehensive about balance issues.

    He also can't stand the smell of vinegar -- he has a strong physical response to it. Frankly, I think it's a symptom of his CP. I believe his reaction to olfactory stimuli is atypical. That could be, I feel, just as much a neurological symptom as any other.

    He's now nine years old, won third place in the citywide spelling bee, and is one of the brightest, gentlest children you could ever want to meet.

    If your child is diagnosed with CP, get therapy early and as often as you can. It will benefit the child immensely.

    Hope that's a little helpful. (From a Dad, by the way)

    Thanks for your relpl. It's great to hear your son is able to be so active. That is encouraging. Alex is already in PT once a week through earlyintervention for his 'tone issues'. I know I cannot predict the future, but it is good to hear about other people's outcomes because they are invariably better than the worst case scenarios I can picture in my mind on my 'off' days!

    Thanks,

    Angie

     
    Old 02-19-2004, 08:48 AM   #7
    angie75
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    Re: Possible CP in 10 month old preemie

    Quote:
    Originally Posted by Mommyof4
    My son is 19 months old and has mild CP. He actually goes in for his 2nd MRI tomorrow morning. The first one showed excess mylenation in his frontal lobe. It affects his executive decision making. He was a late sitter, crawler, and walker. He has spastic quaraplegia which is a stiffness in all 4 extremeties. He also has Oral/Verbal Apraxia, dysphagia, and aphasia. All of those long words simply mean that he has speech and feeding issues!!LOL

    One thing about CP that I take heart in is that it will not get any worse. It takes awhile to figure out the scope of the problem but if your baby learns to walk, he will always walk. My son walks well but has a spastic plantar flex so he can't wear shoes. His toes curl down and won't straighten. He gets ST, OT, and PT twice weekly. He will go to a speech oriented preschool next year but the plan is to mainstream him into regular school later on.

    I don't know of any actual information I can give you other than our story. I hope that gave you hope. To the world, he looks like a normal happy, although very small, toddler

    Thanks for the info. I am glad to hear your baby is walking well at 19 months. That is great.

    Angie

     
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