Eliana started college not too long ago. After being diagnosed with infantile spasms as a baby,we NEVER thought she'd be able to attend college. At six months Eliana had still not rolled over or used her hands. She continued to cry and scream and make the odd movements. Denial was over. Something was wrong. We could no longer say "She'll roll over tomorrow. Give her time." The morning of her appointment with her pediatrician Eliana was sitting in her baby seat and she had a series of the movements in a row. Her eyes rolled back in her head and she let out a shriek. This was the worst I had ever seen and I was terrified. My husband and I both went to the pediatrician. The doctor put Eliana on the examining table and lifted her up by her arms. Eliana's head flopped backward and the pediatrician said, "Her head control is terrible."
I heard nothing after that. I left the room and went into the hallway where I leaned against a wall and cried hard.
One of the tests recommended was an EEG. The doctor said the strange movements could be seizures. Seizures? I thought seizures were all-out convulsions. I never knew they could be as subtle as a head bob.
The drug of choice to treat infantile spasms is a corticosteroid called ACTH. It has horrendous side-effects. The worst thing about ACTH was that it didn't really help the seizures much. They never stopped. The EEG was modified only slightly and her development seemed to be going backward. We were all miserable and there seemed to be very little hope.
Tegretol was next. Nothing helped. I saw some information about the ketogenic diet. I went to the medical library at our local hospital and read all I could get my hands on about the ketogenic diet. The diet was a very old treatment and had fallen into disuse somewhat. The books I was looking at were from the 1920s. It definitely didn't seem mainstream treatment any more. We tried it...
My parents were visiting from Europe after Eliana had been on the diet for over a month. We were all sitting in the living room when suddenly my father said, "I haven't seen Eliana have a seizure today."
We looked at each other, startled.
"Jan, have you seen her have one?" "No," I said. "Frank, how about you?" He had not. Mom had not either.
We barely dared to breathe. Could this be the miracle we had been hoping for?
17 years later we KNOW it WAS. Eliana surpassed all expectations.