mommy4
04-04-2004, 10:16 PM
hello everyone.......my daughter was diagnosed with cp about a month and a half ago..and i just found out the type of cp that she has.it is called Ataxic cp....i am very unfamiliar with this type and i was wondering if anyone out there has this type of cp...and i was wondering if anyone also has hypotonia.my daughter she is 4yrs old and she has had epilepsy since she was 2months old....and ever since she started walking at 18months i knew there was something wrong.....the dr.s have told me the unsteadyness,developmental delay and poor muscle tone was side effects from her meds...well years went by and she was taken off that certain medication and put onto something else.....after years of going to dr.after dr. this latest dr. finally finally listened to me..and ran a bunch of tests....he told me she had cp but never told me the type...i just recently recieved the report of her visits.and her diagnosis's are epilepsy,hypotonia,developmental delay,and ataxic cp...and i am waiting the results of another test which they are testing her for angelman syndrom.....if anyone out there has the same things or has a loved one with some of these i would love to chat with you......any responses would be very helpful and appreciated....
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musicmaker650
04-06-2004, 01:22 AM
Hello,
I have a good friend who is the Director of Independent Living in Virginia. She has a son, and also has a Masters Degree in Political Science. She has Ataxic CP from birth. She is 54... Does this give you some insight as to your daughters many posibilities? Nurture her and give her what she needs, as we would any child. It's up to you as her parent to support her, and never limit her hopes and dreams. Her abilities will far exceed her disabilities, if you let them. Please remember this...
I have a good friend who is the Director of Independent Living in Virginia. She has a son, and also has a Masters Degree in Political Science. She has Ataxic CP from birth. She is 54... Does this give you some insight as to your daughters many posibilities? Nurture her and give her what she needs, as we would any child. It's up to you as her parent to support her, and never limit her hopes and dreams. Her abilities will far exceed her disabilities, if you let them. Please remember this...
mommy4
04-07-2004, 10:30 AM
thank you musicmaker for your reply...but that wasn't my question please reread my post...of course she can do anything.....i am going to send her to college someday and she can be whatever she wants....right now she talks about being a dr.....that is for real 4yrs old and with big dreams.......nothing will ever stop her and i will make sure of it........
musicmaker650
04-07-2004, 01:20 PM
I know that wasn't your question, but I do know you'll do what's necessary for your daughters physical well being. Her disiblilities will always be there, but that's not going to be the important issue in her life, her life will be the most important thing in the long run... not her disability :) Tests, tests, tests... I hate tests. Get these out of the way and continue the important tasks of nurturing, teaching and loving!
screamingdemon
04-07-2004, 04:45 PM
hi my name is sandy i have a 2.5yr old daughter who has ataxic Cp ... hypotonia, epilepsy .. global delays .. no speech etc etc ... the cutest little girl you could ever meet! Hope to hear more from you soon ... !
Sandy . mum to jessica 9, lindsay 7 and heather 2.5 ... in the uk :)
Sandy . mum to jessica 9, lindsay 7 and heather 2.5 ... in the uk :)
watchful
05-12-2004, 08:25 PM
I wrote you a long reply but I guess my session timed out and it was lost. My 15 year old son has ataxic CP. He has the characteristic wide legged gait and clumsiness, tremors in his hands, severely impaired fine motor skills (includes speech), poor balance and poor depth perception. He has a great deal of difficulty in school because of his language impairments including dyslexia. The tremors in his hand make writing legibly impossible so he uses a computer. He is severely dyslexic so we try to find him books on tape, although this does limit the selection.
He started walking at 15 months and was diagnosed at almost 3 years of age when I took him to a neurologist because I did not agree with his pediatrician that his shakiness was within normal ranges.
His biggest issue at this age is friends. The tremors in his hands make eating difficult so the kids don't like to sit with him at lunch. His clumsiness makes him "uncool" to other teens who are busy struggling with their own shortcomings. It is a difficult age. I am hoping we can find some friends with disabilities so he won't feel so "different".
He went skiing at the ski school for the disabled at Winter Park this past February and had a blast which was encouraging. We worry about his moodiness and loneliness.
He started walking at 15 months and was diagnosed at almost 3 years of age when I took him to a neurologist because I did not agree with his pediatrician that his shakiness was within normal ranges.
His biggest issue at this age is friends. The tremors in his hands make eating difficult so the kids don't like to sit with him at lunch. His clumsiness makes him "uncool" to other teens who are busy struggling with their own shortcomings. It is a difficult age. I am hoping we can find some friends with disabilities so he won't feel so "different".
He went skiing at the ski school for the disabled at Winter Park this past February and had a blast which was encouraging. We worry about his moodiness and loneliness.