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Re: Ketones, again!

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Jodi,

When Max was younger, he always spilled ketones, even when he was

not sick. He had a lot of difficulty staying stable, hence the g-

tube feedings for years - even when he was 10/11 years old. He

could not go all night without eating or he would wake up with

ketones.

How did we find this out? Well, first I noticed his breath. It

always smelled like nail polish remover to me. (Others call it a

sweet, fruity smell, but it's not that way to me. In fact, even now

when I go to a nail salon and smell the polish remover I

instinctively look for Max to check his breath!!) It was Dr. H. who

pointed out the ketone thing and she had us checking them every

morning. Eventually I was so good at it that even now I can smell

his breath and tell you if he has them and at what level.

Should you check 's ketones on a regular basis? It would not

hurt to do it for a little while and establish a baseline. It's

totally painless, you can buy the strips at any drugstore and it

would put your mind at ease. Keep a diary of the results and see if

there is a pattern. If, after a couple of weeks, you don't see any,

then you don't have to worry except when he is sick. If you do find

ketones and he is not sick, then you can increase his pump rate a

little bit and see if they can be " flushed " out. It may take a few

hours, but they will go away. If they don't, then you need to

contact Dr. H. and discuss it with her.

I hope this puts your mind at ease.

Jodi Z.

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