Saving One, Sacrificing Another – Love and Pride

Saving One, Sacrificing Another

By: Stacie Lewis

Early after May’s release from the hospital, it became clear for the doctors that May’s seizures were the biggest concern. Like the rest of her injuries, the cause of her seizures perplexed them. One by one, May trial’d numerous seizure medications –seven so far; currently May takes four. May began the most recent addition, Lamotrigine, two weeks ago though, due to its side effects if administered too quickly, it will take three months before she is on the full dose.

We hope, as we always hope, that this one will be the one. That this one, will be the one, and not the four she takes.

Early on, therapists mentioned a ketosis diet that we could try once May was older, to see if we could get her off these medications completely. What a lovely idea that sounded like.

That was before I read Fred Vogelstein’s article Epilepsy’s Big Fat Miracle in the New York Times Magazine this weekend. Until then, I thought this diet was a typical, healthy diet of the kind you would expect a hospital affiliated with Harvard Medical School to prescribe.

Vogelstein’s son has almost 100 seizures/day. That sounds outlandish, even to me, but then I remember that at one time May had over 800/day. Luckily, May’s medications keep that number down. Before her new medication, she was up to 3 or 4 an hour (that’s almost 100/day). We are in the honeymoon period of her new medication – today we saw four, which is great news, if it continues.

That was exactly the problem with Vogelstein’s son. Despite medication, they did continue, in fact they got worse. So, he took drastic measures, albeit drastic measures backed up by medical science.

As he describes it, his son’s diet is almost 90% fat. “Some might argue that unhealthful food is all we let Sam eat. His breakfast eggs are mixed with heavy cream and served with bacon. A typical lunch is full-fat Greek yogurt mixed with coconut oil. Dinner is hot dogs, bacon, macadamia nuts and cheese. We figure that in an average week, Sam consumes a quart and a third of heavy cream, nearly a stick and a half of butter, 13 teaspoons of coconut oil, 20 slices of bacon and 9 eggs.”

Not only that, but he is strictly forbidden to eat anything outside of the diet. Everything he eats must be weighed. Every recipe made must be eaten in its entirety. There is no room for maneuver.

There is a fine line walked in the name of children’s health. Saving one thing at the sacrifice of another. Clearly, Vogelstein and his son feel it is worth it. If he continues, there is a chance he could come off the diet seizure free in a couple of years.

I’m not sure I could put May through this. Already, we know that she finds eating not impossible, but definitely difficult. She can’t feed herself and she often tires mid-meal. These variables would work against such a regime.

However, the most profoundly difficult obstacle to surmount would be my reluctance to refuse to feed her things she enjoys. After all, delicious food is a pleasure she can achieve and I’m not sure that would be a sacrifice worth making.

Stacie Lewis writes at Mama Lewis and the Amazing Adventures of the Half-Brained Baby


[Photo Credit: New York Times]

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