We’ve been putting a lot of thought into trying out the ketogenic diet with our son lately, but we’re not quite sure whether or not it is the right choice for him for seizure control. Our situation is a little unique:

Cameron is 8 years old. He suffered from drop seizures when he was younger. We were lucky enough to get these under control around 2 and a half years ago. We were hoping that when Cameron’s seizures got under control, we would start to notice a progression in his skills (Cameron has Angelman Syndrome, and is as “low functioning” as I have ever heard for AS). We were thrilled that with a mixture of 3 meds, his drop seizures were finally under control, but we didn’t notice any benefits in the way of progressing with skills. I started to think that perhaps this was just the way Cameron was, and that his Angelman Syndrome was more severe, etc. We (neurologist and I) also wondered if maybe he had a second genetic disorder, but being faced with another dismal diagnosis didn’t really appeal to me, so I didn’t push for more testing.

We also wondered if perhaps Cameron had more seizure activity that we weren’t seeing. So, we repeated an EEG while Cameron had “seizure control”, and it did show significant activity. Around this time, I started paying attention with great interest to stories from other parents about the ketogenic diet- a radical, strict diet used to help control and even eliminate seizures in children. Not only was I intrigued by the stories I heard, but I kept hearing about how not only will the seizures affect the child’s progress and skills (including seizure activity we can’t see), but how the meds can also dope up the child to the point they can’t learn new skills.

So, my brain is reeling with this- perhaps the reality I accepted that this is just the way Cameron is, the way he is meant to be, isn’t really true. I’ve always thought there was more to Cam than he could express- a great deal more. Is it masked with seizures and harsh drugs that he’s been on since the young age of 2?

My husband and I met with the our local nutritionist to discuss the ketogenic diet, and hopefully weaning Cameron off some or even all of his medications. The problem with the diet is that it takes complete dedication and control. Cameron is mainly g-tube fed, which actually makes the diet easier to implement, but it would mean most of the things he CAN eat by mouth, he would no longer be able to have. I don't really want to have to give up on his skill of eating all together.

We also have concerns about things beyond our control- like, what happens when his little sister pops a Cheerio in his mouth- will it throw him into seizures?

Most importantly though- we are afraid to mess up the seizure control we DO have by playing around with things. Most kids are put onto the diet when drugs have failed- not when drugs seem to have helped them.  What if we cause major problems?

I’m filled with mixed emotions- excitement at the possibility of Cameron having a better quality of life. The possibility of maybe getting to “see” his personality a little more. Hopeful that we can get him off some of those horrid medications. Scared to stir up seizures that could do more damage or that we’ll be unable to control. I’ve thought a few times that if it were me, I would probably take the risk, as I think most people would if they could make their own decision. It is hard to make these life-altering decisions for your child when you can't get their input...