As you are probably aware of by now if you’ve been keeping up with this blog, James has been suffering from infantile spasms (a form of epilepsy) for over a year now. We’ve tried the top two treatments for infantile spasms, ACTH and Vigabatrin, but neither has seemed to help. The neurologist has been playing around with different seizure meds and dosages, but still nothing.
Since none of the meds were working, the neurologist recommended we try putting James on a ketogenic diet to see if that helps. Wait, what?! I’ve heard of the ketogenic diet, or keto diet, for losing weight, but for curing infantile spasms? Apparently, the keto diet has shown some good results in people with seizure disorders. Here is an article and video from ABC News that was just recently posted about it:
Unfortunately, our neurologist does not deal with the ketogenic diet, so he referred us to another neurologist that does. We met with her on Tuesday to further discuss the diet and to see if she thought James could benefit from it. She seemed to think so, so today we met with the nutritionist that the neuro works with. The nutritionist went over the diet in further detail and gave us a couple of handouts on what to expect when we start the diet. We need to get a few things lined up with insurance before we start the diet so it might be a week or so before we can get James started. And the nutritionist told us that we need to inform her of any med changes, and the that we will need to use special toothpaste, lotions and chapstick with James when he is on this diet. Since the keto diet is a high fat / low carb diet, we need to be cautious of anything that goes in or on James’ body. Sounds weird, I know. I would not have thought that things like toothpaste or lotion would have an effect on the diet, but apparently it does.
I hope this diet works, but to be honest, I’m not holding my breath. Nothing else has worked so far, so how is a high fat diet going to work? Who knows? Maybe this will be the miracle cure that we’ve spent so long looking for.
