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Old 03-20-2005, 10:49 AM
Kennedy&ZachsMom
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HI...my 3 1/2 year daughter is special needs. She has been given the diagnosis of ataxic CP, with out knowing the cause. This just pretty much explains her movements. She is unable to walk unassisted yet. She has global delays. She is very wobbly and uncoordinated. She also is very small and has a g tube. She has a hard time eating because of her shakiness and problems coordinating her movements to chew well. She does eat food, but it takes her a lot longer than other kids her age. She has been having tons of tests done for quite a while and still have not found anything to cause her problems. She just had an eeg done this past week to rule out seizure activity. In a couple weeks she will have another MRI and a lumbar puncture done. They are looking at metabolic/mitochondrial disorders. They are also in the process of doing a skin biopsy. It gets frustrating doing all these tests and still not knowing anything. So far her problems havent gotten worse. We are watching her head growth though cause it is small and if doesnt grow on the curve, could be a sign of a progressive disorder. She is in early childhood classes and gets OT, PT, and speech there. She also gets OT, PT and feeding therapy privately. All her dr. say she is smart and think she will catch up cognitively...that the cognitive delays are because she has had to work so hard learning the physical things. Just with speech therapy her receptive language went from severely delayed to almost at age level. I know she will have a lot of problems in school because of her language and fine motor problems. Who knows when or if she will be able to write because she is so shaky. Most likely she will have to work with a lot of adaptive equipment to help her out. Right now she has a walker and in the process of getting a chair that will give her a lot of support to stabalize her. Besides her movement problems and slow growth, she is a healthy toddler. She was born premature, but didnt have any problems, and was released from NICU after 10 days. The only other problems she has had was ear infections when she was teething. Her hearing is fine. She is supposed to wear glasses and has some mild optic atrophy. Pretty much if you looked at her you would just think that she was a lot younger and very uncoordinated.
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