This week’s Warrior of the Week is a great story. Our Warrior is Eliana.
Eliana is now 25 years old and has lived through Infantile Spasms. Please take a look at her story in both hers and her mothers words.
My story, below, is from my mother. It’s missing a few years between then and now, so I’ll start with an update. I’m 25 years old, and I’ve lived in the UK for one year, now searching for a long term job or freelance opportunities. It’s been almost 3 years since my graduation from uni. During those years I worked as a tutor, research assistant, and a chess teacher alongside full time classes. In childhood I had no seizures at all, but in my mid-teens I developed epilepsy again. Thankfully, it’s mild and has been easily controlled. Most of the seizures themselves are episodes of paralysis of my left arm and clenching my left hand. In between seizures, and even with medication, that arm is weaker than the right. A Cognitive/neurological difficulty with mathematics and certain related tasks is associated with epilepsy. My uni suggested the connection but I cannot say for sure. However, I’ve been able to adjust well enough. I haven’t seen any other effects in this regard.
Here is what my mother wrote. Eliana was diagnosed with Infantile Spasms at 6 months of age. She had not rolled over, was not using her hands, and was becoming increasingly stiff and spastic. She was losing the ability to hold her head up, and suffered violent jackknife spasms. We were told that she would probably grow up severely retarded with many physical problems. The first drug we tried was ACTH. Ellie became withdrawn and irritable, and stopped making eye contact. She cried all day and all night, except while nursing. She had fits of uncontrollable rage so bad that another customer in a grocery store accused me of abusing her.
Though the ACTH moderated her EEG somewhat, and the seizures were somewhat less violent, they did not decrease in frequency, and as she suffered from a half dozen illnesses at once due to her weakened immune system, her developmental skills dropped to nothing. I left New Orleans and spent 13 weeks in Los Angeles looking for answers from one of the top researchers in infantile spasms. He put Ellie on a DOUBLE dose of ACTH. She didn’t sleep, she didn’t respond to anyone, she developed the extreme cushingoid features associated with the drug. She had thrush so bad from the lowered immunity, that the entire inside of her mouth, her neck and face was white with fungus. Double dosing did not work either. We considered brain surgery, but the PET scans were inconclusive (I can’t believe we actually contemplated removing half of my daughter’s brain). We then tried Tegretol. Ellie’s seizures stopped for two months, and she began to develop, smiling again, learning to roll over and to sit up. Then, at one year (on my older daughter’s third birthday) Ellie had a breakthrough seizure. Her seizures rapidly climbed back up to 20 a day. We were devastated.
We experimented with dosage levels, but nothing worked. Then someone on the Internet’s epilepsy discussion group suggested that I read Seizures and Epilepsy in Childhood, which contained that wonderful chapter on the ketogenic diet. I had seen one brief reference to the diet in a medical paper when Ellie was first diagnosed, but when I brought it up to my pediatrician her response was “I would never put a growing child on this diet.” End of story. But after reading the chapter in this book from Johns Hopkins, I went to the medical library and did some research on my own. Most of the references were in very old neurology texts and journals, but the more I read the more convinced I became that the diet was our answer. Felbamate was our only other option. In December of 1993 we had an appointment with her neurologist. She was reluctant to put her on Felbamate because she said that it hadn’t been well tested in young children. I tentatively suggested the diet. After discussing it with her colleagues, she told us she was very willing to give it a try.
In January of 1994, Ellie was hospitalized to begin the diet. It took a month of fine tuning until she had a day free of seizures. At first,(the dietician mistakenly told us that protein did not need to be restricted, but upon re-reading the papers we phoned our neurologist who confirmed the error. Elimination of Tegretol also helped, because of its high sugar content. My parents were visiting at the time and I remember very clearly the whole family was sitting watching TV when my father suddenly said, “I haven’t seen Ellie have a seizure today, have you?” Not one person in the room had seen a seizure. We watched her carefully for a few more days, but she remained seizure-free. She has been seizure-free ever since (down from 50 seizures per day at her worst). Last Monday, almost a year after starting the diet, she had an EEG. The neurologist said it was completely normal! This child’s EEG went from wild hypsarrythmia to COMPLETELY NORMAL because of a diet! She is now 2.5 years old, bright and curious, with no physical handicaps. She appears to understand much of what we say, and is even talking. We have high hopes that she will be able to lead a normal life, despite the dismal odds we initially faced.
Here is Eliana who is now aged 25.