By Stephanie Ly
It
was a sunny and glorious Muskoka morning when our daughter, Pepper,
had her first seizure. It wasn’t the first time I’d seen a
seizure, but it was alarming to watch my nine-month, otherwise
perfectly healthy baby girl, drop and seize.
We
called 911 and had her taken to the nearest hospital. Since it was
her first seizure, she was otherwise healthy and her vital signs all
checked out as normal, we were sent home without further treatment.
Two
seizures later that same day, she was treated with a low dose of her
first anti-convulsant medication. So began a series of hospital
visits and medication trials for Pepper worthy of an 80-year-old in
poor health.
My
only knowledge of the medication Pepper was first prescribed was that
it was used to treat dogs with seizure disorders. No joke. I had a
friend who treated his dog with the same medication after the dog
suffered a stroke and began to have seizures. So why were we treating
our daughter with this medication? And why, when this drug stopped
working, was she prescribed another anti-convulsant? And then, yet
another? And after a year, why were we still
manipulating her doses with
little effect? Why? Why? Why?
Epilepsy,
or rather intractable epilepsy, as Pepper is known to have, is a
condition where treatment fails to control seizures. Since she was
nine months old, Pepper, who is about to turn three, has experienced,
at most, a month’s repose from seizure activity.
Despite
pharmaceutical intervention, she continues to have seizures regularly
and we don’t know why. Pepper doesn’t appear, from numerous
genetic tests, to have any genetic basis for her condition. Nor does
she appear to have any physical cause for her seizures. She just has
them. Like that. And like that, she takes medication, which doesn’t
control her seizures.
The
medical community doesn’t always discuss with you all the pros and
cons of the medication they prescribe, though they attempt full
disclosure based on their awareness. Instead, their mandate is to
treat the symptoms in the most effective and, to their knowledge,
safe manner available. Sometimes, in times of crisis, you are left
wondering, where are my options?
First Do No Harm is a movie about a mother trying
to save her son with intractable seizures. The concept of “first do
no harm”—a fundamental medical precept by Hippocrates—is
important to our family because for two years Pepper was given an old seizure medicine known to cause
developmental delay, without doctors telling us of this connection.
Our
daughter has developmental delay, so that feels like a failure on our
part.
In
First Do No Harm, the child is finally treated using the ketogenic
diet, which is a natural alternative to medicine that we learned
about at the Hospital for Sick Children.
The
ketogenic diet alters the body’s metabolism to create changes in
brain chemistry that prevent
seizures in some people.
Pepper
was admitted to Sick Kids in late May of this year to begin her own
journey on the ketogenic diet. The diet itself is a low carbohydrate,
high-fat diet in which the body converts fat into energy, rather than
using glucose, in a process called ketosis. Ketosis is the same
process that kicks in when someone is fasting, and fasting has been a
traditional seizure treatment for centuries.
There
are a few variations of this diet used to treat epilepsy. Pepper is
following the MCT Diet, which uses Medium Chain Triglyceride oil as
one of the flash points for initiating ketosis. It is a strict diet
and it takes patience, vigilance and strength. Good thing we have
those—in spades.
Since
Pepper started the ketogenic diet, we have had major adjustments in
our household. Time management has been a huge shift. Meals must be
prepared in advance and with precision (we weigh and measure to the
very last point of a gram). The meals are then packed with care so as
not to expose the oils to light, or to spoil the fresh foods that
Pepper goes to preschool with every day.
Her
meals are administered, much like medication, at certain times of the
day, with even spaces in between. She’s given plenty of water to
keep her kidneys clean and stone-free. Her ketone levels are
monitored twice daily, her blood glucose levels are checked
occasionally and she is always being watched for seizures, digestive
ailments, fatigue or discomfort. Since day one of her first seizure
she has not gone without someone’s eyes on her, and this diet hasn't changed that aspect of our lives.
What
has changed, however, is that we've
seen cognitive improvement! Since
the second day of her admission to hospital, Pepper went from being
mostly unresponsive and in her own little world to interactive and
engaged. It was something immediate and so noticeable. It gave us
hope, and it still does. As for seizure control, we are still in the
process of determining the diet’s efficacy and will be for a few
months.
We’ve
definitely seen a reduction in seizures, and Pepper has recently gone
three weeks without a seizure, which has been remarkable and
promising. We have hope, something we were slowly losing over time.
A
typical day on the ketogenic diet starts the night before, or
sometimes many nights before. Fresh food is always prepared in
advance, with very few ingredients and simple foods. Pepper does not
get any processed food, with the exception of a specialized drink to
raise her ketones. Otherwise, she is getting a protein, a
carbohydrate, a vegetable and/or a fruit and a fat at breakfast,
lunch and dinner. Each of these food categories is weighed according
to her meal allowance.
Preparing
meals two days in advance and having things pre-chopped helps a lot,
as does buying frozen fruits and veggies (it’s easier to improvise
when you have a freezer full of fruits and veggies).
Pepper’s
combined meals total approximately 900 calories per day. This is
within range for her age. The meal sizes however, appear so small.
For example, at lunch, she might get roughly the size of a tablespoon
of rice, a tablespoon of chicken, a tablespoon of peas, a pad of
butter and four grapes. To think that I could almost polish off a
whole roast chicken to myself is eye-opening.
It’s
also not easy. Most children Pepper’s age would turn their cute
pouty faces away from such food restrictions. This is where her good
nature and developmental delay are an advantage. She doesn’t have
the cognitive awareness to protest, or to expect anything different.
She just accepts what she is given.
We
on the other hand, have had to adjust to many things. Our shopping
list, of course, our eating schedule and finally and most challenging
of them all, our routine. Finding the time after a long day’s work
to prepare everything has been a challenge. But we do it.
Just
as Pepper continues to smile with each meal, and with each newly
acquired skill, and another day passes where she doesn’t have a
seizure, and we all finally have a restful night, we adapt.
We
accept that our daughter has a seizure disorder that may or may not
be treated. We live day to day with the uncertainty of Pepper’s
seizures. We have good days and horrible days. It’s a constant up
and down of emotion.
Our
biggest coping mechanism is Pepper’s smile and her laughter. It’s
amazing how when I look into her eyes, and connect with her, I forget
the worries outside. She has a way of healing our fear and
disappointment. I can shut out the negative energy when I focus on
the positive she gives me.
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