Re: JESSICA - IMPORTANT!!!

[Guest guest]

,

I am thinking about you guys. Let us know how you are doing. I am

assuming you are at the hospital. Hang in there.

Jodi R.

's mommy

>

> 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

>