Calm in the Storm

A Personal Story of a Child's Life with Epilepsy

There's Something Wrong
Fri., Jan. 6, 2006

I have always wanted to be the mother of a large family. My husband and I were looking forward to having a house filled with the laughter of many children.

When our second child was diagnosed with a serious, debilitating illness called infantile spasms, it seemed that our dream would be dashed.

Eliana was born in 1992 and a sibling for her big sister, Tovah, who was 2. Eliana was a gorgeous, happy baby, and my husband, Frank, and I were over the moon enjoying her. She smiled early and gazed at us with her big, blue eyes. Her smile and her eye contact were two things we would lose in the coming months.

When Eliana was 4 months old, she started to cry a lot. We should have known better than to write the crying off as colic. Colic normally ends at 4 months old, not starts. There is a strange phenomenon called denial. It could not be possible that something was wrong with our beautiful baby.

Those strange little movements she was doing were surely due to a baby's immature neurological system. All babies made odd little movements, didn't they?

We had no idea we were looking at something extremely serious.

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.

After a while I was able to re-enter the room and listen to more of what the doctor had to say. "I suspect cerebral palsy, but I am not sure. We need to admit Eliana to the hospital so we can do extensive testing. We need to get to the bottom of this."

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.

A flurry of activity ensued. Making sure our older child, Tovah was taken care of, packing a case for a long stay in the hospital. One thing I did was to call my parents who then lived in France. They have always been my rock in difficult times. "Eliana is very sick. It's serious. We do not know what it is."

That's all they had to hear. They drove through the night from Lyon to Paris and boarded the next plane for the U.S.

Getting a squirmy baby to sit still while a technician attaches a myriad of electrodes to her head is not easy. I nursed Eliana while the EEG was being performed. It was to be the first of many EEGs. I became an expert at removing glue from fine baby hair.

The EEG results helped the diagnosis to cement. An awful diagnosis. Eliana had a characteristic EEG pattern called hypsarythmia. The hypsarythmia, seizures, and developmental delay lead to the diagnosis of infantile spasms -- an innocuous name for a devastating disorder.

Bad as this news was, there was worse to come. Infantile spasms can either be a disorder in itself or a symptom of a larger disorder. It can be cryptogenic or symptomatic. We didn't know yet if she had the cryptogenic kind or the symptomatic kind due to possibly a brain malformation, tuberous sclerosis, Down syndrome or Aicardi syndrome.

Further testing ensued including genetic testing, a Wood's lamp to test for tuberous sclerosis, and MRIs and CT scans to check the brain structure and function.

Eliana turned out to have cryptogenic infantile spasms. The cause will probably never be known. Was it the high fever I had in my first trimester? Something I was inadvertently exposed to? I cannot even begin to speculate.

Ironically, the diagnosis of 'not knowing why' meant a small glimmer of hope. Babies with cryptogenic infantile spasms tend to have a better outcome. Still, the prognosis was incredibly grim: severe developmental delay, difficult to control seizures, physical problems. "We do not know if she will ever walk or talk," the doctors told us.

Eliana was admitted to the hospital during the Hannukah season. According to our tradition, this is a time of miracles. We were going to need a huge miracle.

A Child Suffering, A Family in Pain
Sat., Jan. 14, 2006

Infantile spasms is sometimes called West syndrome, especially in Europe. What is tragic about that name is that Dr. William James West was describing the progression of the illness in his own child.

The drug of choice to treat infantile spasms is a corticosteroid called ACTH. It's very expensive and hard to find. I would find myself going to 10 different pharmacies -- one vial here, one vial there.

The drug is a thick gel that has to be administered by injection. In the hospital, I had to learn how to give the injections by practicing on an orange.