Letter from LaTisha
LaTisha from Ohio writes:
“My son Stone has had health and developmental problems all of his life. During his first five years he was in the hospital several times for open-heart surgery, pneumonia and bronchitis. When he was six, we noticed that he would stare off and be unresponsive. Because of his developmental delays he was unable to communicate so he wasn't able to tell us what was going on. Our doctor scheduled an EEG and put him on Tegertol.
Then, in May 2008, he got really sick with bacterial pneumonia and was at Nationwide Children's Hospital for 27 days. I was with him day and night. He started to have seizures where his whole body would shake, then others where the lower half of his body would stiffen up. The resident on the pulmonary floor would try to get a neurologist, but by the time one would arrive the seizure would be over. We saw several neurologists and every one said something different. One told me he was having seizures and another said they were not seizures. It got so bad I even started to doubt myself. It was the most helpless feeling in the world to not be able to help him.
With the lack of sleep and stress, one night I turned into a crying mess. A nurse came in to help. She really listened and I think after that got a hold of the pulmonary doctor to tell him what was going on. The next day the doctor went straight to the top and got a neurologist who had dealt with children with other disorders besides seizures. The neurologist took charge of Stone's care. She had other tests done and advised us on what medication he needed. Most importantly, we found out that Stone was having seizures and I was validated in pushing for his care and diagnosis of epilepsy. We found out that Stone has Mec P2, a genetic disorder.
Today we are living day-to-day with Stone's epilepsy. He never has a seizure-free day, but with all we've learned it's a little more manageable. The hard work it takes to learn all you can about epilepsy is overwhelming, but my family is doing the best we can to give Stone as much of a normal life as we can.
Thank You,
LaTisha Shuster”
