Today is International Epilepsy Day. Collin was first diagnosed with Infantile Spasms, a catastrophic seizure disorder, on June 23, 2009. He was four months old.
Collin's seizures have been completely under control for over five years now, which is something that still makes me shake my head in wonder. Even more amazing is that he hasn't taken a single anti-epileptic drug in those five-plus years. His medicine is food.
Last year, Collin and I had the chance to speak to a group of physicians at a conference about the ketogenic diet, giving insight into how we implement it in our daily lives. One of the questions has stood out in my mind over the months:
What is the financial cost of the ketogenic diet?
It's an issue that hadn't entered my mind because Collin's seizures were so bad that I was willing to do and pay anything to stop them. But I think it is important to address the financial side of this treatment. As parents consider completely overhauling their child's diet, it's natural to wonder if they will also need to overhaul their budget.
Here is my answer, based on very little science but lots of experience. It's important to note that my assessment is based on a whole foods ketogenic diet. Some kiddos use Ketocal formula, and that's a different monster, depending on health insurance and even location.
The foods needed for the ketogenic diet are on the expensive side as far as groceries go: oils, creams, proteins. However, the diet calls for children to eat a reduced number of calories, so quantities are smaller than typical portions. Also, Collin can eat no processed foods, which cuts down on costs further.
Some supplements make the ketogenic diet more pleasant and/or effective. Because of the high fat content in his food, Collin gets very little natural fiber, so he needs a fiber supplement. It is also difficult to get enough protein for a growing kid on the diet and studies have shown that adding amino acids can make the diet more effective, so Collin takes a complete amino acid powder. Together, high quality fiber and protein powders cost about $25 a month. Insurance does not cover these supplements, though they do cover carnitine, which most keto kids take to help with fat metabolism.
In short, the ketogenic diet may be marginally more expensive than a conventional diet. Compared to the benefits of gaining seizure control with few or no side effects, however (even if that seizure control isn't complete), the difference in cost amounts to a non-issue.
Next time, though, we'll look at an undeniable issue: the hassle of the ketogenic diet.