My daughter Tessa is 10 years old, and she has been having seizures since the day she was born. We have no history of epilepsy on either side of our family. When doctors told me she was fitting, I didnt even know what they meant. Fast forward a decade, and I know quite a bit about seizures (though I would like to repeat that I am not a doctor and I am not offering medical advice). Tessa has had many different types of seizures. For the first four years of her life, she had many tonic clonic status seizures (long grand mal seizures). Her seizures frequently lasted 20 minutes and sometimes as long as an hour. By the time Tessa was 4, we had called 911 around 75 times, and we sometimes stayed in the hospital for weeks at a time. Tessas brain MRI appears normal. We have tried dozens of seizure medications, the Ketogenic Diet, a Vagal Nerve Stimulator. We tried osteopaths and vitamin supplements. We got 2nd opinions and 3rd opinions and 15th opinions from pediatric neurologists across the country. Tessas development waxed and waned with her health. When Tessa was 3, she was placed in the ICU as her medical team tried to induce a coma in order to stop a status episode. While on continuous EEG monitoring and with an NG tube in place, we started Tessa on Felbatol and life got a bit better. When Tessa was 4, we added in Diamox and life got even better. In fact, Tessa started walking within just a few days of starting Diamox, and the combination of Felbatol and Diamox controlled her larger seizures. However, Tessa continues to be pretty severely impacted by SLC13A5. She continues to have hundreds of myoclonic absence seizures daily. I am attaching a video of one of her seizures. She drools quite a bit and only eats soft foods. She speaks a little bit, but she is hard to understand. She has good receptive language and can read and do basic math. She is unsteady on her feet. Tessa is a really sweet girl with a great sense of humor. We feel so blessed to have her as our daughter, but we are so hoping to find better treatment options for her.
Posted on: Thu, 16 Oct 2014 06:11:20 +0000
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