This summer Hayes went through periods of increased seizure activity (then we upped the medicine), intense lethargy (we thought it might be the upped medicine and dropped back down but in retrospect it may have been exhaustion from the increased seizures), and renewed energy (after a third medication was added). I came to the doctor with a lot of questions, the biggest being, “What’s the goal here?”
I didn’t know what to hope for re: seizure control. Obviously, I want Hayes to have ZEROSEIZURESEVER, but I don’t want to up-up-up his medicine every other month. Honestly, I was really pleased with adding the third medicine and seeing a resumption of Hayes’ normal activity, energy, and attitude – even though he was still having a few seizures a day. (Prior to the added third medication, Hayes was sad all the time, tired, and was beginning to lose some of the skills he’d worked so hard to gain. He hardly had the energy to hold his head up. With the addition of the third medication, he was like his old self!)
Our doctor said, “We want complete seizure control. I want it to be very rare if he ever does have a seizure – like, once a month.” And we agreed that we all want to do this in a way that maximizes Hayes’ ability to be alert and happy.
And so, the ketogenic diet was brought up. Since we’ve tried 4 of the ‘top’ medications, and none have done the trick 100%, it seems we are unlikely to find a ‘miracle’ drug that will get us that total seizure control. This, plus the certain type of seizures Hayes has (Infantile Spasms, which generally -if uncontrolled- develop into a syndrome called Lennox Gestaut) makes Hayes a good candidate for the diet.
We’re excited about the diet. It isn’t generally the first thing that’s tried because at the get-go (and why we went with medicine at first), the ultimate goal is to get the seizures under control. And fast. And the diet obviously takes a bit longer.
Basically, (in a super simplified explanation that I’ll probably get a little bit wrong) the diet is understood to work by changing the way the brain works. (Which is what medicine does too, and usually faster, but synthetically.) It’s believed that brain seizure activity can be fueled by sugar (no, not just the bad kind). Before the time of Christ when people still believed seizures were the result of evil spirits inhabiting the body, people who suffered from seizures were starved to rid them of their ailment. And sometimes, it worked. Now we know that was probably because the brain started using ketones for fuel, which your body produces when it is starving. Now, through the ketogenic diet (which is basically like an extreme Atkins diet), we can essentially trick the body into thinking it’s starving, which in turn produces ketones that the brain uses instead of sugars. This works to reduce seizures in about 1/3 of patients.
We’re going to the hospital to start the diet (standard procedure) because some kids have trouble transitioning their eating and drinking habits in such an extreme way and refuse to eat or drink at all. While he’s there, he will also get another 24 hour EEG. We are pretty optimistic that Hayes will be cooperative and do well, so we are hoping for the minimum stay of Monday – Wednesday. We’re also hoping that his body responds well to a less extreme version of the diet so that we’ll have greater flexibility in making his meals at home and won’t have to worry about things like the carbohydrates in his toothpaste.
Please pray that this diet is a wonder for our Hayes, that he responds well and quickly to it, and that he won’t experience the side effects that can happen. We have committed to the diet for at least three months, and we want so badly for him to be in the 1/3 of kids who go on to become seizure-free. We would love to see him slowly taper off his medications in the future, come off the diet, and live a medication-free, have-a-donut-when-you-want-it, seizure-free life.
Here are some handy-dandy links if you’d like to read up on the ketogenic diet.