Calm in the Storm: A Child's Life with Epilepsy (cont.)
TWO painful injections every day. Twice the screaming, twice the symptoms. More trips to the ER for even the most minor cold. It was horrible.
I almost gave up hope completely because it didn't even work. She continued to seize, she was miserable, she was still not developing skills. I was in a strange place away from my family.
Our doc decided that Eliana could benefit from a PET scan. Since one side of her body was weaker, it could indicate a focal point from which the seizures were originating, making surgery a possibility.
The PET scan involves injecting a radioactive dye into the body. The machine detects radiation from the emission of positrons and a diagnostic image can be acquired. It sounded all very high-tech and futuristic.
The morning of the PET scan, we arrived at the hospital and Eliana was prepped. All was going well until we heard sirens and saw helicopters circling overhead. Down in the ER, a crazed gunman had taken some doctors hostage and was demanding drugs. We were locked down in the hospital. The test was disrupted and we had to have it rescheduled.
After all that, the PET scan was inconclusive. Another hope dashed -- surgery did not look like an option.
The doctor decided to try a slightly unusual drug to treat the infantile spasms. Even though Tegretol is a common anti-epileptic, it is not often used for this particular type of epilepsy. We were going to slowly wean her off ACTH and add Tegretol at the same time. I remember the sticky, orange liquid that Eliana gladly opened her mouth for. Such a pleasure after blunt needles and her poor pincushion legs.
Tegretol began to work really quickly. Within two weeks of admission, Eliana stopped having seizures. The doc said he had never seen it work so fast. Then the abrasive, somewhat cold doctor made a joke: "I believe the medical term is 'weird'!"
Marcia and I laughed later at the neurological joke. Another thing makes me chuckle all these years later. Ellie had at least 15 EEGs during her treatment. Once I was in the hospital cafeteria getting a salad. There was a bowl marked 'EGG' on the salad bar. I stared it for ages trying to figure out why they had named a salad ingredient after a medical test -- one-track mind, I guess.
After 13 weeks in Los Angeles, Tegretol was working so well that we were able to go home.
Tovah, grandma from England, and Daddy had been able to spend a few days with us in Los Angeles right before we came home. We spent a wonderful day at Universal Studios. Wonderful except that one man decided that it was worth his time to get out of his entrance line to come over to ours and comment on Eliana's appearance.
Still, that barely marred the day. Tegretol was working, Eliana was happier, the sun was shining, and my family was with me. There was hope. I remember that day as extremely happy.
We had four blessed months of seizure-free days. The EEG still wasn't normal, but things were better. Then on the morning of my older daughter's third birthday, Eliana had a breakthrough seizure.
It was back to our local neurologist to try and get some answers.
She told us about a new drug called Felbatol. She was a little reluctant to try it, as it had not been tested well in children, especially children as young as Eliana, who was 18 months old. It also can cause aplastic anemia, which is fatal. Felbatol, even today, is severely limited in its use.
There was also no way to know if it would treat infantile spasms. There was no way to know what the side effects would be for Eliana.
I had a wonderful book in my arsenal of epilepsy books, Seizures and Epilepsy in Childhood by Dr. John Freeman. He's a doctor at Johns Hopkins hospital and they had a program that used a diet called the ketogenic diet. The book contains one chapter on the diet and it sounded really intriguing.
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.
But the more I read, the more I wanted to at least give it a go. Did we have anything to lose?
Armed with information, I returned to our neurologist. "I want to know if we could consider a rather unorthodox treatment?" The doctor was willing. That was a blessing. I found out later many doctors were very reluctant to try this diet at the time.
We arranged a date for Eliana to be admitted to the hospital. We were getting good at this hospitalization routine. Eliana was eighteen months old and had seen more doctors than I had seen in my entire life.
The ketogenic diet mimics a state of fasting in the body. Eliana would basically be starved for a period of time until her body began to produce ketones which could be measured in the urine and blood.
After the initial true fast, the effects would be maintained by carefully limiting her carbohydrates and protein and feeding her large amounts of fat. Her body would treat the fat as if it was burning its own fat, a metabolic state known as ketosis.
Most of her calories would come from fat, in fact. Everything would have to be carefully weighed and measured. Even her water intake was to be limited. Any deviations could throw her out of ketosis.
I had to buy a special scale that measured to the nearest gram -- a difficult piece of equipment to find. At one point Tovah said "Right... Eliana cannot have food anymore, she can only have grams."
Everything had to be fine-tuned to find the perfect balance. It took us approximately a month of working with the doctor, nutritionist and Eliana's food preferences until we got it right.