Wednesday, September 10, 2014

Hope that high-fat diet will tame a little girl's seizures

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.

Follow Pepper’s story at UnSeizeTheDay. 


Thanks for sharing, i hope the very best for you and your daughter.

Thank you so much. It means so much to us.

Thank you so much. It's like getting a virtual hug! :)

I'm sending you another one Stephanie! I'm so grateful you shared your journey with us. You will have to keep us posted on the diet over the next couple of months.