Keto Day 3

And it starts off as Tony the Tiger would say.... GGGGGRRRRRRRRRREEEEEEAAAAAAATTTTTTTTTT! (Ok so I probably drug that out a lot longer or something but you get the gist.) *giggle*

Awoke this morning to Midget getting a blood draw. I wasn't awake enough to ask what they were testing but the nurse took a small bit of the blood to check his sugar levels.

They are down.... dropped 20 points and are in the upper 80's! WOOT!

We checked his ketones too and he is at 2+! WOOT!

This means he's finally getting into ketosis. FINALLY! WOOT!

I guess the increase in his ratio yesterday helped. (Oh and I was wrong yesterday. They increased his ratio from 1.5:1 to 2.5:1 not 2:1. My bad!) I'm excited that things are working out so far. YAY!

He might get released today since he's finally showing a good change but I don't know yet. They might keep him until tomorrow just to make sure he's in good ketosis. That's up to the dietitian though.

So far he's not had many seizures.... although I'm thinking that we just aren't seeing them as much because he's been pretty sleepy. I noticed at least 1 last night but it wasn't anything major. A decrease in his seizures would be ideal but the main reason I wanted to do this diet was to get him off the Phenobarbital.

Midget's epilepsy is complicated. Even today, there isn't a lot of research and knowledge about why seizures happen. In a child who has a reason for seizures--like Midget and his head trauma at a young age--at least there is a reason but it's still unclear as to how seizures work...... at least that was my understanding when I was reading The Ketogenic Diet by John Freeman.

I decided to go into this diet cautiously optimistic that he will be one of the ones who is completely relieved of his seizures. But I know there is a very high likelihood that he will not be one of those kids. Since his seizures are mostly from the scar tissue that has formed inside his brain from the damage, I know that it's likely we will never be completely rid of the medications or the seizures. It saddens me to think that but I'm trying to be a realist here.

The book says that when a child is starting the Keto diet (at John Hopkins), the medical team has the parents write out their expectations for the diet. I voiced these goals to the dietitians yesterday but I think it's good to have them written down too. (I'm sure I'll add a page to his Keto notebook when I get home but, for now, I'll put them here.)

Success of the diet, for us, would be that Midget can come completely off the Phenobarbital and have reduced amounts of Keppra and Zonegran (if they are still needed).

The side effects of the medications are, in my opinion, taking away my child. Some of the side effects of the Pheno include agitation, constipation, insomnia, apnea, and even anemia in chronic use. Keppra and Zonegran are listed with the same side effects. So Midget is getting it 3 times as hard!? *sigh*

Early on the doctors said they like to wean kids off of the Pheno by 18 months because of the side effects usually seen in children like agitation. Yet here we are, 3 years later, and Midget is still on this drug! We have tried to wean him a couple of times but as soon as his levels would drop the seizures were back stronger and more frequent. It's not easy to watch your child go from a deep belly laugh to looking like someone scared the crap out of him!

The book says that most kids who don't have seizure control with 2 medications have less than a 20% chance to have success on any others. Midget is on 3 and is still having seizures. I definitely think this diet was our next step.

Midget has 6-8 seizures a day. I know that doesn't sound like much but that's just the ones I know he's having. An EEG in 2007 told us that he has seizures when he's sleeping and also when he's not showing physical signs of having seizures when awake. So in reality, the number he has per day could be much higher and we don't even know it.

Having a decrease in the number of seizures he has would be a great benchmark goal. If we could get all of his clonic seizures to go completely away, I can live with the absence seizures. (Half the time, I don't even realize he's having an absence seizure until I can't get a reaction out of him.)

For now, I think those are my 2 main goals for this diet. I'm optimistic all ready that we can achieve these goals. (I have to be optimistic or what's the point in doing it, right?)