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Thank you for a wonderful inservice program today. The Norwalk school nurses could not speak more highly of your presentation. We all learned so much... Grace - School Nurse Supervisor
Faces of Epilepsy
Leah has epilepsy, but you’d never know it. She is a spunky 5 year old who lives life to the fullest. She attends full day kindergarten and really excels! She goes to gymnastics and loves it. For Leah, having seizures and taking medication is just a way of life. She doesn’t really know any different.
Leah’s seizures started on August 17, 2012 with a grand mal seizure – the scariest day of our lives. 911 was called. We had no idea what was happening and what was wrong with our little girl.
We brought her to the epilepsy center at Connecticut Children’s Medical Center where she was diagnosed with epilepsy after an EEG was performed and they put her on the anti-seizure medicine, Keppra. Unfortunately Keppra alone did not seem to work for Leah, so shortly thereafter Trileptal was added to the mix.
After an MRI in October and a PET Scan in December of that year, we found out that Leah had a lesion on the left frontal lobe of her brain. Was that where and why the seizures were happening? The doctors were unsure. Leah still continued to have break through seizures on a weekly basis and the talk of brain surgery was discussed so off to Boston Children’s Hospital’s Epilepsy Center we went.
We have been seeing the doctors in Boston since March of this year. During that time, she has had numerous EEGs, doctors’ appointments and lots of blood work done. Onfi was added to the mix of her medications in May but she still had breakthrough seizures.
In July, Leah developed a head tremor. Her head shakes 24/7 and the amazing thing is that it doesn’t seem to bother her. She is so resilient. She doesn’t let it hinder any of her daily activities.
In September, Leah was taken off Keppra and Depakote was added - three medications, two times a day hoping that this would stop the break through seizures. This is not the case. She still has seizures a few times a week, typically right after she falls asleep.
Leah recently had another MRI. This time, the news was even worse. Leah has brain shrinkage. At this point, the doctors are unsure of why this is happening but many more tests are in Leah’s future.
Dealing with three separate issues for a 5 year old – Epilepsy, head tremors, and brain shrinkage is very overwhelming and quite frankly, scary. The three problems are all getting treated separately for now until a common denominator, if there is one, can be found. However, watching Leah on a daily basis gives us hope that Leah’s future will be just fine and seizure free.