Infantile Spasms:
Eliana's Story






(Note: Infantile spasms is sometimes also called West's Syndrome, especially in Europe.)

Eliana (born in 1992)was diagnosed with infantile spasms at six months of age. She had not rolled over, was not using her hands and was becomming 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 Ellie became withdrawn and irritable, and stopped making eye contact.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 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 different illnesses at once due to her weakened immune system, her developmental skills dropped to nothing. Pictures of Eliana on ACTH

I left home 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 appearance 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 old, 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 a book called Seizures and Epilepsy in Childhood by Dr. John Freeman, which contained a 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 that diet." End of story. But after reading the chapter in the 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 (note: Felbamate was later recalled from the market). In December of 1993 we had an appointment with the neurologist. She was reluctant to put Ellie on Felbamate because she said it hadn't been well tested in children. I tentatively suggested the diet. after discussing it with her colleagues, she told us she was 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 was seizure-free. At first the dietician told us that protein didn't need to be restricted and ironically Tegretol had sugar in it and Ellie's seizures didn't stop until she was weaned from the Tegretol.

My parents were visiting in February 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 (down from 50 a day at her worst).

Now Eliana is reading in two languages and is on the 'A' honor roll at school. She graduated speech therapy, she has no physical problems. She really is our miracle. A normal, happy little girl.

Darling Ellie Written to Eliana by her grandfather when she had infantile spasms.
An Infantile Spasms Diary by Eliana's mother


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Excellent Ketogenic Diet Web Sites:

Keto Option
Stanford's ketogenic diet site
Rick Loek's Keto pages
Keto Klub Web Site
Family Village Keto Site

More Infantile Spasms Web Sites:

The Infantile Spasms Web Ring
Rob Ever's Epilepsy in Young Children Site
Moms of Infantile Spasms Children
Parents Epilepsy Support Group
West Syndrome Support Group
Eliana's Page on Rob Ever's Site



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E-mail Jan at tead@ivillage.com
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