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Emily Brooks

Hi, My name is Emily Susan Brooks. I will be 5 on February 15, 2004. I was diagnosed with Aicardi Syndrome when I was 3 1/2 months old. I began having small seizures almost right away. Nobody but my mom knew something wasn't right with these little episodes,(staring spells and twitching).Then I had a grand mal siezure and doctors did an EEG. Very luckily, I had one while doing the EEG and was being video taped also. The doctor that reviewed my "infantile spasms" was familiar with the syndrome and I was diagnosed quickly. Needless to say, I had a cat scan and ultrasounds, that revealed enlarged, space-filled ventricles, cysts and no corpus collosum. For my seizures i took phenobarbital in the beginning, that didn't work. Since then I have been on Lamictal, and now Topomax and Keppra. Finally, I'm almost seizure free! I am just having some minor twitching, mostly facial ones. I cannot speak but make lots of noises and have a dozen smiles a minute for everyone around me. By biggest accomplishment so far is beginning to walk as of Father's Day of this year.I always surprise my doctors with new things I learn all of the time. And so far I'm staying away from the nasty bugs that make me so sick. Physically I'm very low tone and I have a tough time with constipation but hopefuly both will get better the more I walk. I have so much love and support from family (4 other sibblings) and friends. I know I will do much more and keep amazing everyone with my new abilities as I grow and I look forward to meeting lots of Aicardi friends!

<p><b></b><br><u>update, January 15, 2006</u><p>I did want to share how Emily is doing with her seizures. We unfortunately have been having a rough time with them. At least a year now seizures have been on a very frequent mostly daily basis. In fact, the last 6-8 months or so there have been several (2-10) daily. Emily has always had several different types of seizures. Right now we struggle mostly with startle seizures and drop seizures.She does have grand mal tonic seizures also, sometimes once a week or every other week that we have to give diastat for them to stop. Emily is able to walk. Not very steadily but she is able. We have had to limit her walking due to falling and drop seizures that were causing alot of facial injuries. Emily has been on several different medications. And always on 2 or more at once. Currently she is taking Topomax, Keppra and Depakote. She also 3 months ago got the VNS. We so far have not seen any benefits from the stimulator. But, we have been told not to give up hope with it yet, as we continue to adjust the dosage on it. Her neurologist just told us last visit that we are about to exhaust all of our options for controling her seizures with medications and her quality of life is deteriorating so he feels that we should visit with Epilepsy specialists about possible brain surgery. Of course, we're very frightened about brain surgery, but hoping that it will be the best thing to reduce the number at least.
We'll update on Emily and her struggles with the seizures when we know more. They are talking about possibly February to Minnesota. Good luck to all the other girls and their families.

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