Well, the countdown is on. Today is April 12th. My 8 year old son is being admitted in less than a month to the children's hospital (May 11th) to be put on the ketogenic diet. I'm a little nervous, but also looking forward to seeing if it can help him.

Cameron's visible seizures are under control, except  for a few breakthrough seizures we've seen in the past year. So, why are we trying the ketogenic diet with him? (He's the lowest functioning child I've ever heard of). Because we know he *should* be functioning at a higher level for someone his age with Angelman Syndrome. The neurologist and I have wondered if he has a 2nd genetic condition affecting him, and tossed around the idea of testing him, but personally, I don't know if I want to know.

We know from doing an EEG that Cam is experiencing seizures, even though we can't see them. So, it is hard to know how much those seizures are affecting what he can and can't do. He has also been on very sedating seizure meds for several years. Between the seizures and the meds, we are assuming that some of what he CAN do is being clouded. We're hoping that with the diet (as a seizure "medication"), we can wean him off of some of his sedating meds. And we're also hoping it will help the seizures we aren't seeing. I'm not expecting miracles, and I know that some people have experienced "miracles" with their kids and the ketogenic diet. But, what I am hoping for is some kind of mental clarity for Cam. I'm hoping that he can make more eye contact, and focus more. I'd like to see him being able to use his hands better to functionally pick something up.

What is the ketogenic diet? It is a very high fat, adequate protein and no carbohydrate diet that typically kids go on to help them get seizure control. I am including a few resources below for you to refer to for more indepth information if you're interested. I was a bit hestitant in the beginning about putting my little guy on a diet so high in fat, but typically the kids don't stay on it for more than 2 years, and it is really any healthier to be pumping all those drugs into his little boy long term? I doubt it.

We received some resistance from our local pediatric nutritionist in the beginning on trying this with Cam. In our province (New Brunswick), it hasn't become a popular method of seizure control yet, and to be fair, she hasn't seen a lot of good outcomes yet. But, the children's hospital in Nova Scotia really views this as a very valuable treatment, and they have a whole system of professionals and such in place. This is why we are going there to start it out, and we'll consult with them as needed. For us, it will be much simpler to do this with Cam, as he is almost fully gtube fed, and he honestly doesn't care if he eats by mouth. It will be relatively easy for us to measure out his needs and give them to him by formular, whereas a child eating by mouth has to have every single item carefully weighed, and you'd have to try to keep your child from eating those 3 cheerios (or whatever carbs) that could throw them into seizures, etc. Yes, for us there will be much less complication.

Cameron got a little bit of chocolate for Easter today. He'll get to have a nibble of that, then no chocolate again perhaps for 2 years. For him, he won't mind. For one of my daughters, it would be torture (for them, and for us!)

So, in less than a month we will go and be admitted. Cameron will have tests done (an EEG and blood tests) and they will fast him and monitor him and his blood levels. And we will introduce the new formula and vitamins and we will be taught exactly what we CAN feed him by mouth if we are to give him something.

I'm very fearful of messing with the seizure control we DO have, but I am excited by the possibility of more mental clarity for him, and giving his body a rest from the medications. I'd appreciate if you could keep us in your thoughts and I'll keep you posted on how we make out.


RECOMMENDED RESOURCES:

The Ketogenic Diet: A Treatment for Children and Others with Epilepsy is a book that the children's hospital sent us in preparation for the diet. I haven't read it all yet, but it is a great book (obviously, if it is the book that they recommend as a resource)

Keto Kid: Helping Your Child Succeed on the Ketogenic Diet -I've heard Deborah Snyder speak in an interview about her experiences.