Britt’s Story

Frightening! My daughter was born in 1988, post-mature by C-section, with fetal distress. Things seemed to go okay, aside from ‘colic’ issues… until age 10 months. She began having jack-knife seizures so violent that she would tip over a high-chair, and they were increasing in number. She was shortly diagnosed with infantile spasms (epilepsy) and treated with a variety of meds, with little effect. Finally, at age 18 months, she was started on ACTH injections, which seemed to help.

All was well until age 5, when she started school. Since she was seizure free (on Phenobarbitol), doctors decided that she could be weaned off her medication to improve her concentration. Multiple types of seizures ensued; she started wearing a helmet, and we never regained control despite trying a mix of medications. Her seizures went up to 25+ per day (those were the ones we could count!).

After a year and a half of trial and error (which included both common and experimental treatments/medications), we found the Ketogenic Diet. It seemed to be a miracle, but was very difficult to maintain with a school-aged child. We drew from my daughter’s strength, hope, and resilience… seeing her determination and discipline in sticking with the diet. (It brought tears to our eyes seeing her turn down a candy-cane from Santa Clause because it’s not on her diet!)

She was great for the next 18 months on this treatment; gradually, she began having seizures again (only this time, they included grand mal seizures, which can be fatal). Our last hope was a hemispherectomy surgery, where they remove the half of the brain where the seizures originate from. We prayed that she was a suitable candidate for this. She was admitted for testing at Miami Children’s Hospital and ultimately had an 8+ hour surgery two months later.

She is now a healthy, vibrant 28-year-old woman, who has only had two seizures since February 1998. I can’t thank Dr. Duchowny and staff at Miami Children’s Hospital enough for giving my child her life back!!

Parents of children with epilepsy… never give up hope!