Julie was 10 months old when she was diagnosed with epilepsy. There's nothing more terrifying then watching your child seize, yet we were about to discover something even worse. Julie was prescribed Phenobarbital to control the seizures. I was advised the only side effect was drowsiness. I was unaware that something as simple as a tiny pill would begin a lifetime nightmare.
Within 2 weeks of treatment Julie developed blisters and a high fever. Her eyes swelled shut and wouldn't open again for 2 months. She was diagnosed with chicken pox, conjunctivitis, double ear infections and strep throat. She had no exposure to these illnesses. Over the course of the day she continued to worsen. By the next morning I rushed her to an emergency room. Her pediatrician called ahead to notify them a child with chicken pox was arriving.
Her mouth was filled with blisters and she was severely dehydrated. An IV was started and Phenobarbital was added. By now the blisters were breaking and her skin was sliding off. For the next 3 days she continued receiving Phenobarbital intravenously until a nurse said this is Stevens Johnson Syndrome!
I had no idea what that was. At last we could get her better. Little did I know SJS was one of the most severe adverse reactions a person can suffer from. Anti-convulsants are among the top causes. Julie quickly escalated to Toxic Epidermal Necrolysis the most severe form of SJS. After a month, treated in a burn unit with burns over 80% of her body Julie was released. Her eyes, ears and throat suffered extensive damage. At no time were we offered the Ketogenic Diet.
One month later I watched a dateline Story about Charlie Abrahams. His father Jim described a wonderful safe, drug free, treatment for epilepsy. It breaks my heart that this treatment was available for over 70 years but never offered to us. I wonder what life would have been like for Julie if she had been given that choice. They say hind sight is 20/20, that certainly pertains to us. Julie is blind in her right eye and has low vision in her left, she has photophobia, dry eye syndrome, a swallow disorder, scarring in her esophagus and inside her ears and she is one of the lucky ones. Many SJS patients die. The drug Lamotrigine has such a high incidence of SJS in children that it carries a black box warning, yet neurologists rarely pass this information on to their patients.
I can never thank Jim and Charlie enough for appearing on dateline and giving Julie a second chance. Before the diet Julie suffered life threatening grand-mal seizures and status epilepticus. At 15 months old with the help of Jim Abrahams, Julie started the ketogenic diet. After two and a half years she was weaned off and remains seizure free.
Julie, now 16 is enjoying high school.