Ketogenic Diet 101

I go to sleep thinking about the Ketogenic Diet and I wake up thinking about it some more. This is it. Our last chance. If ever you were concentrating your hopes and prayers on something good for Lydia, this is it. Please let the Keto Diet work for her. This is her best hope for relief from the seizures. The devastating seizures. This just has to work. I’d chew off my arm to get this to work.

The Ketogenic Diet is a high-fat diet that causes the body to use ketones for energy instead of the usual glucose. This reduces and sometimes eliminates seizures. No one quite knows why. It has been used to treat epilepsy since, well, 500 BC. With the introduction of antiepileptic drugs the diet simply fell out of fashion. Now it is being rediscovered for hard-to-treat epilepsies that don’t respond to drugs.

We are incredibly lucky to live six miles from a hospital that offers the diet. There are only around 100 or so hospitals across the country that have it. You’ll be getting to see the views across the city from our hospital window when they check us in for the heavily monitored, initial getting-on-the-diet period. They will be carefully watching her blood sugar levels as her body goes into ketosis. Demented, but I can’t wait. This just has to be the solution.

So when? you ask. Well, there is still a slight chance that the steroid treatment she’s on will work. So they want us to give her the predisolone for one more week. But I haven’t seen any improvement so far. Then there’s a weaning-off-the-steroid period of two weeks. Then we’ve got an awkward week before our new insurance kicks in (yes, in the middle of it all, we’re changing insurance…but I am so crazy glad we have insurance – can you imagine?). Then I’m hoping we can get this party started as soon as our new insurance starts on December 1st. With the insurance change, we will have to establish a primary care doc for her, probably visit the in-network neurologist (at Kaiser) and get all the referrals in place. Can we do that in one day and have her start on the diet Dec 2nd? I sure as heck am going to try. I’ve got a lot of phone calls to make over the next few weeks…

About the Ketogenic Diet: