Maggie was my youngest of three kiddos. Her brother Dan (20) is the oldest, Mary Kate (18) is right in the middle and Mag just turned 16 in September. Being the baby, Maggie was often the center of attention.
Maggie has Lennox Gastaut Syndrome, a severe form of epilepsy. She didn’t get that diagnosis until she was 10 years old. Before that diagnosis, Maggie was diagnosed with generalized epilepsy. Maggie had her first Grand Mal seizure at 14 months of age. I remember getting the kids ready to go to the YMCA and she dropped into a seizure. Dan and Mary Kate became little medics and helped me call 911 and help Mags, the best we could until the squad arrived. That trip to Children’s kept us in the hospital for 3 days. Tests were done over the 3 days and no one could find anything that would “cause” these seizures. We were sent home with no medication or diagnosis. That same night, Maggie started having seizures again. My husband and I arranged for Dan and Mary Kate to stay home with their grandparents and off we went back to Children’s. This time, Maggie’s seizures were clustered together. They wouldn’t stop, so the doctors gave her medication to stop them. Again, test, waiting, finally an answer. Epilepsy.
And so the journey began of medication trials.
A new type of “normal” fell into step at our house. Maggie changed. She lost her spunk. She was now medicated to try to keep her brain calm. Over the next 15 years, Maggie would try many different anti-seizure combinations and therapies for her functional and academic delays. Maggie was non-verbal, so one of the doctors out her on the autism spectrum (PDD-NOS). Maggie had eating problems. She threw up almost every time she ate or drank. She started seeing a GI doctor for GERD. Around 10 years old, Maggie was diagnosed with Lennox Gastaut Syndrome. I was relieved, but we finally had a diagnosis that seemed to fit our monkey. Around the same time, Maggie had stopped gaining weight. We ended up having a g-tube put in so Maggie could get the nutrition she needed. During this surgery, Maggie had more extensive damage to her esophagus then the doctor expected. The surgery took more time and Maggie’s lung collapsed. This was the beginning of her chronic lung disease. In addition to medications for seizure control, she now had to be fed through a tube in her belly 6 times a day. Her lungs kept us in the ICU for 14 days.
A couple of years passed and Monkey’s seizures were controlled with medication but pneumonia now took over. Cough assist, shake vest, and oxygen were the new normal.