Ashlyn and her family

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My daughter Ashlee, who was premature at birth and weighed in at 2lbs. 6 1/2 oz., started having seizures when she was 6 years old. She is now almost 8, and her seizures have been under control for almost 1 1/2 years. She had one seizure due to being ill, almost like when your Ashlyn had the flu (infection). And one when the level of her medication got too high. We believe that was also because she had been sick with a cold. What I am writing to you about is the medication she is on. Its Tegretol XR. She takes two, 100mg pills in the morning and two at night, 12 hours later. This medication is time released, so it works alot better than the chewable Tegretol that she was on before. When she was first diagnosed, they had her on Dilantin and Phenobarbitol. They ran all the tests on her too, and couldnt find any reasonable explanation for them other than the fact that she was a preemie. The mystery is, that the seizures didnt start until she was six years old. Anyway, please ask Ashlyn's pediatrician about this medication. It may be a better way to go for her. My Ashlee sees a pediatric neurologist, and he is wonderful. He says that this medication is preferable for younger children with seizure disorder.

Hopefully, this may work better. Anyway, just know that you're not alone. There is no other feeling as bad as the one you get when your child is ill and you feel helpless. I do. When Ashlee does have a seizure though, we have to call the ambulance out for her because she almost stops breathing. Her oxygen level goes down very low and they have to get it to her quick. Helplessness, yes. Hopeful, yes. Hang in there, and may God Bless you, your family and your little Ashlyn.

Judy in California

-- posted by Ashlees_Mom

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