Monday, October 28, 2013


The point of this diet is to produce ketones. His ketones were high in the hospital and so they lowered the ratio from 2:1 to 1:1. That was 4 days ago. His ketones have still been in the moderate range which is good. That is until this morning. When I checked he was at a trace to small for ketones. Throughout the day and this evening he has been at about the same.

I don't know yet if the dietitian will need to increase the ratio right away or wait and see if it changes. It's really nice being on the lower ratio but we will do whatever. 

Also, I will be talking to his dietitian tomorrow because Jonah is very hungry. I knew he would be hungry but I don't think he needs to be this hungry. He asks for food all the time. He cries for food. He asks for food that he never even used to like. For example, he used to spit out macadamia nuts. Well, on this diet he is allowed one free nut, yes only one. Anyway, when I gave him one he suddenly likes them and cried because I wouldn't give him 2 or 3. I hate it. I hate not being able to give him food when he wants it. It is so hard to watch your child cry because he's hungry and not be able to do anything about it. Hopefully tomorrow we will be able to raise his calories. Worse than that though is to see him have seizures like a tonic clonic (grand mal) or to watch him just fall over out of nowhere and hurt himself. His doctor said herself, this is the BEST treatment for what he has.

This is a change for all of us. We have a lock on the fridge and freezer now. The kids know they can't eat food in front of him. He just doesn't get it. Yesterday he saw Subway on the table and started looking around crying and asking where his was. He jut doesn't get it. He's only 3. 

Sunday morning in his sleep at 6:15AM he had a tonic clonic seizure. A short one but still it has been over 2 months since he's had one of those.

I will end on a good note, he had ZERO drops or any noticeable seizures today!! 

Please keep Jonah and our family in your prayers. We could really use them.


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