JESSICA - IMPORTANT!!!

[Guest guest]

If you are getting a reading of moderate to large ketones, then she

needs to be admitted to the hospital and put on IV, preferably D10,

but some respond to D5, until the ketones are flushed AND she is

eating enough to keep those ketones away. This means that there is

absolutely NO WAY that your daughter is getting enough food into her

body and this has to be addressed ASAP.

The usual course of action is to admit the hospital, NOT the ER for

rehydration. The IV is run, as I said, until there are no more

ketones. The the IV should be lowered to see if she eats more and

can keep those ketones away. This could take days, my friend. If

she does not eat, then there is a good chance you are going to have

to consider a g-tube or at least ng feedings to help her get the

nutrition that she needs.

This is a simple explanation of what is happening. Kids with RSS

have large heads for their small bodies. The brain will take

whatever it needs in order to get the nutrition that it needs. Now,

along with those small bodies comes an inadequate glycogen storage

in the liver and very little, if any, body fat. The brain, as I

said, will use up whatever it can get, and then it starts to burn

muscle for fuel. That spilling of ketones means that the muscle is

being burned. You DO NOT want this to happen. It means that the

brain is kind of eating up the body, so to speak. And if it does

not get what it needs, then the longterm effects can lead to

learning disabilities or even worse.

PLEASE call your doctor right away and explain this. So many of us

have been through this. Look at what just went through with

Ian. Ian would not eat, so he was put on ng tube feedings (a small

tube place through the nose into the stomach) and he gets most of

his nutrition through a pump. If Dr. Harbison knew this was going

on, she would have a fit and have you admit her now.

I know that the bottle of ketostrips says it must be a " fresh

specimen, " but whatever you get from the cotton ball is fresh

enough. Hopefully by now you have collected a little more and

gotten a better read, but even the fact that you cannot get enough

urine to test her means that she is dehydrated.

PLEASE let me know what happens. Call me if you want to. I am

happy to guide you through it. You may have to fight with the

doctor to listen to you, but just read what I have written above and

he/she should understand. And stress the lack of urination. That

is an immediate sign of dehydration.

I will email you my phone number in a private email.

Jodi Z