Calm in the Storm: A Child's Life with Epilepsy (cont.)
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
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.
The needles were very thick and difficult to insert, and a baby wiggles and cries much more than an orange. Sometimes the needle would be blunt and I would end up jabbing Eliana's poor leg.
ACTH has some pretty awful side effects. It lowers immunity. Any normal childhood illness thus became potentially life-threatening. While Eliana was on ACTH, chickenpox went around my older daughter's school. Neither child caught it. We were lucky. The lowered immunity did make her a target for thrush so bad that it completely covered the inside of her mouth and most of her face.
Along with the lowered immunity came an extremely Cushingoid appearance. The face swells. Eliana's eyes were barely visible. Along with the thrush this altered my beautiful baby's appearance quite drastically. People felt compelled to tell me that she was ugly and too fat and that I was a bad mother. Incredible -- they knew nothing.
I have heard that parents of children with autism deflect cruel remarks by refusing to engage ignorant people in conversation. Instead, they have pre-printed cards that they hand out that say My child has autism. If you would like to know more call the Autism Society of America.
I wish I had thought to do something similar; it would have spared a lot of heartache. I would break down in tears when the person was out of sight.
ACTH causes babies to feel miserable. Eliana had steroid rages where she would scream as if in extreme pain. This was always completely unpredictable. Once I was accused of abusing my child while I was shopping for diapers and baby food for her. Eliana was in the midst of a rage and there was nothing I could do to help her.
Eliana stopped sleeping on ACTH, she wanted to nurse constantly and cried nonstop. Once she cried so hard that she lost her voice. She refused to make eye contact, she never smiled, and her developmental skills dropped to zero. We were all under a huge amount of strain. One night my husband came home from work and I just handed the baby to him and left the house. I had to go somewhere quiet.
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.
Things were really bleak. Frank and I had been married for five years at the time and together for seven. In those seven years, I had never seen him cry. He sobbed in my arms about Eliana. I didn't stop crying.
ACTH was supposed to work. Now what?
I had seen a story right when we were about to leave the hospital about brain surgery for babies with seizures. I had been frustrated that check-out was taking so long and had merely turned on the TV to pass the time. It seems I was meant to have heard the story.
It seems that babies' brains are resilient and if a radical hemispherectomy is performed, in which the half of the brain which causes the seizures is removed, then the other half can do a fairly good job of compensating. The younger this is done, the better.
So there we were seriously considering removing half of our daughter's brain, thinking that it was a better solution than the constant onslaught of seizures.
Desperate for Answers
About the time that Eliana was 8 months old, I heard of a doctor in Los Angeles who specialized in infantile spasms. I was desperate to see him, but I was looking at spending a lot of time in L.A. and we were not exactly rich.
How on earth were we going to pay for airfare, medical bills, and living arrangements? Our older daughter was still very small. What was I going to do with her? The odds seemed stacked against us.
But things worked out. Grandma from Florida came to take care of Tovah. Our Rabbi raised money for our airfare and the Los Angeles Jewish community opened their homes for Eliana and me. We were on our way. I encountered much kindness, including the flight attendant on the flight over who offered us her house when she heard why I was going out there.
We ended up staying with a lovely family. There were four kids in the family (which seemed like a huge number to me at this point) and the youngest had both Down syndrome and infantile spasms. Marcia R. was an inspiration to me. She was a wonderful mother and her son was thriving. She was an extremely upbeat person and she refused to let me give in to my sorrow.
In Los Angeles, I went to see the doc. He was a little hard to deal with -- abrasive and cold -- but he was an excellent doctor. The first course of treatment he used was to our Eliana on a DOUBLE dose of ACTH.