August is a significant month for me. A year ago, I took the overnight bus from Ottawa to Toronto so I could stay with India at Sick Kids. The bus was only half-full, the majority of passengers were young men in their twenties. I slept across two seats. My legs bridging the aisle. It was cold because the air conditioner was on too high. Mark and I were trading places so he could finish the heavy packing.
We were moving that week from downtown Ottawa to Lascelles, a village in rural Quebec. To further complicate matters, we were closing both houses on the same day. Life was so crazy that I couldn’t think properly. I kept putting things in the wrong place. The ice cream in the cupboard, the dish-soap in the freezer. A few good friends came to my rescue. They brought boxes and helped me pack. People asked if there was anything they could do and I couldn’t answer them. I was too overwhelmed. This is one lesson I’ve learned from my experience when people are in crisis, tell them you’re helping, don’t ask.
That night, at Sick Kids they were in the process of weaning India off her all her meds. This was worrying because they weren’t sure what would happen. Still, I was grateful she was there and trying something new. I was in a very calm state. There was nothing left that could go wrong. Everything was out of my hands.
Over the past three years, she’d tried: Valproic Acid, Lamotrigine, Clonazepam, Ethosuximide, Keppra®. Each brought it’s own brutal side effects like: suicidal thoughts, excess sleepiness, slurred speech, anger. One drug made her throw-up so violently she began having symptoms of anorexia. These side effects not only hurt India physically but psychologically. Often she acted out of character and her friends would be hurt or surprised by her actions.
Valproic Acid made her shake like a Parkinson’s patient which lead her neurologist to believe she had a genetic progressive epilepsy that might kill her, a truly terrifying disease called Lafora. Instinctively I didn’t believe it, but late at night I would worry that I was wrong. The genetics clinic did a wonderful job but the testing was done in Toronto, the States, and Holland. (Why don’t we do these tests in Canada? ) so it took a year until we had all the results. We doubted ourselves all the time.
The drugs were useless. They made her sicker. I’m certain her neurologist knew it was hopeless. My theory is that he couldn’t face telling us that her epilepsy was intractable so he avoided it by giving us another drug. Before each appointment, I’d tell myself if he suggests another drug I’ll say no. But we were so desperate I caved every time.
We had read about the Ketogenic Diet: a high-fat, protein based, low-carbohydrate diet used to treat refractory epilepsy but when I suggested it our neurologist was evasive. When I politely pushed the matter, he said that at twelve India was too old. One of my goals in telling our story is that through our experience we might be able to help others working to get proper medical advice. The most important lesson I’ve learned is get more than one opinion. In fact, I’d say get as many opinions as you can. And if you live in a small place and they don’t recognize your illness go to a bigger city centre. If we hadn’t insisted on going to Toronto, today I’m certain India would be lost to us, completely racked with seizures. This is one of my major regrets. I feel as if the system took advantage of our patience and politeness. Now when dealing with it, I channel my surly seventeen-year-old self. I resent having to bring out diva Lesley. The truth is I prefer to be polite but the system doesn’t respect it. Recently I was contacted by one of it’s gatekeepers—this is how Mark now refers to the receptionists—who told me India had an appointment in October. When I said we were unable to make the date, she pressed me., insisting that I break my plans. I lost my temper. I hate the insinuation that if I can’t make the date offered I’m somehow being flippant. I had a very legitimate reason. Finally I said, “ Anyway, I think October is unacceptable for a girl as sick as she is.” Oddly, we will now be seen in September.
At five o’clock in the morning, I stood in that huge lobby of Sick Kids. It was like a scene in sci-fi film with it’s eight glass elevators. For the first time in a year, I felt as though we might be able to beat this.
Now-a-days India is on the MCT oil diet and only takes Keppra®. This diet is more flexible than the Ketogenic but it’s still very much controlled. There’s no impromptu eating and her carbs are strictly calculated. No sweeties, no chocolate. Indeed every portion of food she eats is weighed. India is very good about keeping to the diet but when it comes to the 34.5 grams of MCT oil, which she must take every two and half hours, six times a day, she often has trouble. Over the months we’ve invented lots of different ways to take the oil, but it doesn’t matter what we do, it’s difficult. Most recently we started making our own sugar-free ice cream with her milk, MCT oil and her fat allowance.
In order to mark the anniversary I’ve decided to try my best to follow her diet for a week from Wednesday 10th to the 17th. This means no beer. And of course, drinking the oil. In small amounts. It’s apparently very good for weight loss.
Has the oil worked for India? Yes and no. The quality of India’s life is better, especially her focus and her general health. She’s more the person she was before the illness. People tell me they admire her attitude. Nevertheless for twenty-five days of every month, every ten-to-twenty seconds she endures an astatic/absence episode frequently accompanied by myoclonic jerking. (I think of it this way. Imagine, I came and tapped your shoulder every ten seconds for five seconds while you were working, all day long until it was time for bed.) Then for five-to-six days, she’s a normal gal.
At present we are waiting to visit the adolescent clinic because we expect that an imbalance in her hormones may be at the root of all this. We have been saying this for four years and finally we are being listened to.
Since India first became ill, my perspective has altered. Daily I make a conscious decision to remind myself it could be worse. There are many families with greater struggles. Frequently I bite my lip when I hear people berating their children over trivialities. But recently when a woman, began complaining to me that her gifted son wasn’t working to his potential, I couldn’t hold my tongue. “Is he healthy and happy,” I asked.
“Wonderful,” I said. “That’s all that matters.”