Re: Question about meals/snacks and ketones

[Guest guest]

,

The spilling of ketones is not related to what Dalia eats or

drinks. It is related to whether or not she is hydrated enough and

getting enough calories at any given time. When she spills ketones,

it means that her body has used up the stores of glycogen, taken

what it can from the little body fat these kids have and is now

using muscle to burn for fuel. People on the Atkins diet WANT to

spill ketones. But our kids cannot do that. It becomes dangerous

for them and is indicative of a more complicated metabolic issue.

Because our kids, well except for Max lately, eat so little, they do

not store up enough sugars, glycogen, fat, etc., especially in the

liver which is where glycogen is stored. Their brains take whatever

they can at the cost of everything else. Remember, a child with RSS

has a large head for a small body, so the brain needs a lot more

fuel than the body can provide most of the time.

If the child is spilling moderate to large ketones, there is a whole

other protocol that is followed. In fact, spilling ANY ketones is

an issue, but trace to small can usually be rectified by getting the

child to eat or drink - especially drink.

At this point, if it is a struggle with Dalia at times to eat enough

to keep those ketones away, then give her the bottle! It is more

important that she get the nutrition any way you can. She will eat

someday. She is just not going to do it yet. You have plenty of

other times during the day to try to get her to eat something. Just

pull out that bottle and put your mind at rest.

Jodi Z