I started writing on this topic a few days ago and realized that it was much too long for a single post. So here’s the first part of a brain and information dump on the ketogenic diet and how it might fit into our lives. I’ve been using Google Alerts and search engines in an attempt to locate blogs that would give me some insight into other families’ personal experiences with the diet, but the pickins seem slim. Many of the blog I have found are for kids who have far more medical problems than just epilepsy alone (hydrocephalus or Down Syndrome, for example). Do you know any bloggers who have a child like Jade?
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With Jade’s last trip to Vancouver to see the neurologist, we were given a medication schedule to follow for the next nine weeks, with instructions to stop increasing the dose if and when the seizures are completely eliminated. In the meantime, we’re also being referred to a neurologist at BC Kids who deals exclusively with seizure disorders. That particular doctor, Dr. Ha, has experience with the ketogenic diet. Dr. Demos thought that Jade might be a good candidate for it, but said that Dr. Ha is the expert on it; there’s also a possibility that she would recommend other drugs. Unfortunately, the referral process could take a few months.
I’ve been hearing about the ketogenic diet ever since I started researching epilepsy. What I read was encouraging and scary at the same time. My impression was that it can do a lot of good — with altogether miraculous results in some cases — but also that it’s very difficult to maintain. Some of the initial research had me picturing Jade drinking bottles of expensive specially-made oil as her main source of sustenance. Imagine force-feeding a toddler bottles of oil while dining on roast chicken, corn on the cob, and cheese. (Okay, that may not be your idea of a feast, but these are all among Jade’s favourite foods. I picture a rather medieval scene where we’re all at a heavy, ornate table in heavily bejewelled costume, fire roaring in the background, us roaring with laughter, and this poor little raggedly child drinking oil while sitting on the floor and eyeing us hungrily…)
The ketogenic diet: what it is
Wikipedia has a pretty good entry on the topic, and I just added a good article to my ”Epilepsy Resources” links, but I’ll try to give you the Cole’s Notes version. The very earliest cure for seizures was fasting, a treatment documented as far back as 400 BC; it is even mentioned in the Bible. The ketogenic diet, which simulates fasting while still giving the body some sustenance for growth, was deveoped in the 20s, but drugs replaced the diet as the treatment of choice in the late 30s. The diet is starting to become more mainstream again, particularly in cases of difficult-to-control epilepsy.
The exact reason it works is not fully understood, but the basic idea is that the brain is starved of glucose, it’s usual source of energy, and so turns to burning fat. When you’re body is burning fat instead of sugar it’s in a state called ketosis, the same state the Atkins diet aims for. For some reason, this state can sometimes help control seizures.
In order to work, the child must first go through a day or two of fasting (to rid the body of all traces of glucose) and then begins a diet in which 80%-90% of the calories come directly from fat. This is all done under medical supervision to ensure the child doesn’t get dehydrated, to help mitigate some of the initial side effects, and to ensure the body goes into ketosis. The diet is described as “high fat, adequate protein, low carb”. It’s deficient in a number of vitamins and minerals, so the child must take vitamins. (But only sugar-free vitamins!)
The diet in real life
Last weekend, I had the pleasure of chatting on the phone with Stephanie of Adventures in Babywearing. Steph is the mother of three boys and a little girl who is due any day now. Her oldest son, Noah, started having seizures at around the same age as Jade. You can read his full story here, but the very short version is that he was on the diet for two and a half years and is now a happy, healthy, and seizure-free 7-year-old boy. I e-mailed Stephanie to see whether she’d be willing to chat. She’s a busy lady what with her brood, an impending birth, and running several blogs, but she answered my e-mail about 5 minutes after I’d sent it, warmly inviting me to call her.
The chat with Stephanie was very encouraging. I was happy to hear that Noah never had to drink bottles of oil. His diet consisted of lots of cream, butter, and mayonnaise, but he was able to have lots of different kinds of fruits and vegetables, too, just in controlled portions. After a few weeks, he was fine with the fact that his food was different from other people’s food. Stephanie shared some great ideas for making the staples of the diet more interesting, like making the cream into popsicles or adding special flavours to turn them into something more like milkshakes. She was able to work with a dietician who found ways to alter Noah’s favourite dishes to work them into his special diet.
There are challenges, of course. The child has to eat everything s/he’s given (something we’ve never forced Jade to do) and second helpings are not allowed, either. The portions look tiny, but the diet is a natural appetite suppressant. Cake and cookies and other party staples are pretty much off-limits, although Stephanie mentioned that there are recipes for “keto cake”. (She told me about a play-dough cake they made for Noah’s first birthday while on the diet. Brilliant!) Another challenge is convincing people that just because it’s a “diet” doesn’t mean there’s any room for cheating — there isn’t. Cheating on the diet can make the child very ill or even bring back seizures. One thing I’ve heard again and again from different sources, though, is that you get used to it and it just becomes a natural part of everyday living.
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Stay tuned for Part II…