13 days and counting....

Midget starts a new diet in 13 days. You're probably wondering why a 4 1/2 year old would need to be on a diet? Well... it's because he has epilepsy.

Brief background story for those who don't know.

I gave birth to a perfect little 8 1/2 pound baby boy in February 2004. On March 3, 2004, at only 3 weeks old, my perfect little boy was nearly killed. (I know some who are reading this are probably saying, "That's an exaggeration!" but when the doctors tell you there's little hope your baby will live to make it out of the ICU, then it's not an exaggeration.)

My ex-husband... Midget's sperm donor (as I can NOT refer to that thing as a father!).... shook him and threw him on the couch to make him stop crying. (I only know this because the cops told me he confessed to it and made a reenactment tape for them after he was arrested.) The abuse led to grand mal seizures and a stroke. The damage was severe and is, of course, irreversible. Midget now has many severe disabilities including epilepsy. (I'll spare you the long list of diagnosis' because it is looooong and I tend to forget some of the more minor ones.)

Since he was 3 weeks old, Midget has been on Phenobarbital. In young children, the main side effect is drowsiness. Believe me, we saw enough of that in the first year or so (especially after we'd have to increase the dose because he was having seizures). When he was about 2 1/2 we had to add in another anti-epileptic medication called Keppra as Midget was still having a bunch of seizures.

End of last year, on a visit to his Neurologist, she mentioned something about a diet called the Ketogenic diet. I immediately came home and read up on it to familiarize myself with it. I had to decide if I wanted to try it or not. At the same visit, she prescribed another anti-epileptic medication (Zonigran) to help combat the seizures he was still having. (If you're keeping track, that's now THREE medications just for his epilepsy.) Even on all these medications, Midget still has multiple seizures a day.

We've tried to wean Midget off the Phenobarbital several times but as soon as his levels started dropping, his seizures started increasing in amount and severity. I want him off the Phenobarbital because of the side effects. In older children, it can make them agitated and cranky. While my son is usually a ray of sunshine, when he is grumpy, it makes the whole house (which is basically just me) grumpy!

After reading about the diet, I thought it was worth a shot.

The diet has a pretty decent success rate... at least I think so. Of the kids that go on it, 30% end up completely off medications and once they come off the diet, they never have a seizure again and can lead a normal life. Another 30% see a reduction in medications and can maintain that reduction off the diet. Then the other 30% have no changes at all.

I know Midget's seizures are complicated and come mostly from the scar tissue that has taken over the part of his brain that was damaged by the abuse (by the way, he has 50% brain damage). I know there is a high likelihood that he will not succeed on this diet because of the scar tissue. But I'm willing to try it to give him some chance at coming off the Phenobarbital forever and having just 1 seizure-free day! Is that too much to ask for my boy who has been through WAY more than any child should ever have to go through?? I don't think so!

The diet will be difficult but at start, it will be fairly easy (I hope). Instead of having to weight out and puree up all his food, he will start on a special formula. My hope is that we can work him to eating by mouth again. (He receives no food or liquids by mouth because he can't swallow correctly. He is solely dependent on the feeding tube he's had since he was 16 months old.) When that time comes, then we will switch him over to pureed foods again. I don't know how long that will be but it's a goal we have.

Who knows!? We may even start seeing some developmental improvements while he's on the diet. If he's not having seizures all the time, then maybe he can finally learn to push up and roll over, maybe even bare weight on his legs again..... things his 8 month old cousin (who can also crawl) are already doing. Definitely something to look forward to!