Monday, April 8, 2013


I know... I know.  Just last week I told you I was taking a hiatus.  Well its funny how a small hospital room and a kid asleep at 7:30 at night gives you some extra quiet time.

Before you get concerned, this is a planned hospitalization. 

Around this time last year, we were on our way Johns Hopkins, thinking that epilepsy surgery was going to be Will's future seizure control.  In the 10 days that followed, we learned that he was not a candidate for surgery.  Though a bit bummed, we returned home with a renewed earnest to find a medicine combination that worked for controlling Will's seizures.

Will's seizures returned with a vengeance about 4 months after our Hopkins stay, and in a short period of time, Will went from being on 2 epilepsy drugs to 4.  His seizures have been averaging about one per 2-3 months these days, so much more controlled.  And we've been able to wean him off of one of the drugs.  He's still on 3 of them.

At Hopkins, we learned about something called the ketogenic diet.  This is a diet that was developed at Hopkins, and is used to control seizures.  Think of it as Super Atkins.  High fat, adequate protein and nutrition.  Somehow the researchers at Hopkins figured out that when a kid with seizures ate nothing but high fat foods and very limited carbohydrates, their incidence of seizures went down remarkably.

If you ever happened upon a 1997 Meryl Streep made for TV movie called ...First Do No Harm, then you know all about the ketogenic diet.

The science behind this is that when your body doesn't have carbs, it breaks down fats for fuel.  One of the byproducts of breaking down fat is a ketone.  And a ketone is a natural anti-epileptic.  So flood your body with fat, and you flood your brain with ketones.

Because a child's brain is still forming through their late teens and into their 20s, this is the only time to go through with the ketogenic diet.  After 2 years on the diet, there is a 50% chance that the child's brain will be rewired and will not have seizures anymore (with no medication).

Of course there's always a 50% chance that it doesn't work and the child still needs medication.  But at least you gave it a try.

There are down sides of the diet, of course.  Regular nutrition checks are a must because a growing child typically requires a lot of proteins and carbohydrates.  For example, you might feed a kid NOT on the keto diet a sandwich with crackers and fruit for lunch.  You can't feed that to a keto kid.  The keto kid gets a small piece of chicken with a few almonds and a side of mayonnaise.  Not lying.

There are potential issues with constipation  on the diet, so typically Miralax is required.  And some times, the kid's body just does not agree with the fatty diet.  We had this issue with Will before we got the g-tube.

We weighed the pros and cons.  Ultimately we decided that even though Will's seizures are moderately well controlled on his current drug regime, it would be great to get him off of some of those medications.  If it doesn't work, we know that we gave it a try.

So here we are.  Will and I checked in at UNC this afternoon.  Will got all of his typical hospital jewelry - name tag, falling danger tag, and "don't steal my child" lojack arm band.  He tolerated that part pretty well.  I think he knows something is up, though, and has been pretty crabby since we got here.

Over the next 3-4 days, they will slowly change Will's diet (and formula - no more Pediasure for us) from high carb to high fat.  We'll learn about measuring his food, about creating recipes from a large list of fats, about changing his toothpaste and sunscreen to ones that contain no sugar products (carbs), and my personal favorite:

Chasing his liquid medications (which usually have sugar added to them to make them more tolerable to take by mouth) with oil instead of water, so that we always keep up that ketogenic ratio.

Delicious, right?

We'll also be learning about how to take a urine sample daily to ensure that his body is creating the right therapeutic ratio of ketones to keep his brain in a ketogenic state.  We'll likely be taking blood sugar measurements as well, to ensure that he isn't hypoglycemic.

It is going to be a lot to take in, and a lot to get used to at home.  But thankfully, after about a month on the diet, Will's neurologists will start tapering down his medications and we'll have an idea of whether or not the diet is working to control his seizures.  There's something about not having to wait the full 2-3 years to find out if the diet is having an effect that makes it more reasonable and realistic to me.

 Wish us luck!

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