Cait hates thunderstorms. She says they give her headaches and make her feel weird. The year Cait turned six was the year of her inner thunderstorms.
Cait started kindergarten as an outgoing, precocious child. As the only girl sandwiched between two brothers, she never was a quiet child. At that time in her life, she was quick to speak her mind, first to volunteer an answer and loved to meet new people. She thrived in kindergarten. She insisted that we arrive early every day so she could hold story time for the other children (as the only child in her class who could read, she took great pleasure in sharing the advanced picture books with her peers). Then one morning in late spring, everything started to change.
Cait was in the bathroom chattering away to me as I got ready to go to a conference. She had just had cut her hair in to a bob and was looking at herself in the mirror as she told me her plans for the day. Suddenly she stopped talking and both her hands went to her chest. I thought she was goofing around, as she would often do being a little drama queen. I had just started to tell her to knock it off when her eyes rolled back in her head and she fell to the floor so hard it was as if she’d been struck by lightening.
My first thought was that she’d had a heart attack, but as I screamed for her grandmother to call an ambulance, I saw the unmistakable clonic movements of a seizure. And it was a big one. While she stopped seizing relatively quickly, she was completely confused when the paramedics arrived. And this was no febrile seizure. Cait wasn’t sick.
Cait had her first EEG. The neurologist explained that someone has to have two seizures to be formally diagnosed with epilepsy. This was Cait’s third. A diagnosis was made. But we took a wait and see approach for treatment.
We didn’t have to wait long. Two months later Cait had her first public seizure. She was at a summer bike camp and had become overheated which triggered a seizure. Thankfully she was not riding her bike at the time and she did have her helmet on. She got away with only a few scrapes and bruises.
Another appointment with the neurologist and he still agreed we’d wait and see. We did not want Cait to start epilepsy medication. We knew the side effects could sometimes be as debilitating as the seizures themselves. We saw medication as a last resort.
In the meantime, Cait started grade one and soon her teacher called me in for a meeting. She wanted to know if I thought Cait was gifted or academically inclined. School was going well for Cait. We had moved schools and she easily made new friends. But she was anxious about having a seizure at school. She remembered the kids at the bike camp. “Mommy, the kids were scared of me.” She told me tearfully one night. She was terrified a seizure would happen in front of her new friends. But her teacher did something quite remarkable. She worked with Cait to do a simulation of a seizure and they spoke in class about epilepsy and seizures. Cait’s friends were accepting and she started to worry less.
Then on Thanksgiving Day Cait had five seizures in a row. We went back to the neurologist and he said she needed to go on medication. Again we resisted. Cait’s father asked if they were sure it was epilepsy. An emergency CT scan was ordered and came back normal. Epilepsy was the diagnosis and a prescription was written.
Still we weren’t comfortable medicating Cait. So we decided to wait and see on our own. We figured that we could fill the prescription if and when we needed to.
Then she had 12 seizures in one day and was hospitalized for 3 days with a Dilantin drip. When she came home from the hospital it was with a prescription for Clobazam. And the side effects that would transform our little girl into a different person began.