Re: ketones! NO ONE CARES!

[Guest guest]

Missy Anne,

So long as is tolerating the pump feeds and the ketones

are going away, he is okay. I know it is incovenient, but it may be

that he needs the extra calories for now. And being sick makes

things a bit more complicated. It's great that you are able to use

the pump. If you could not, then you would have to insist that he be

admitted to the hospital and put on an IV.

Meanwhile, if he is spilling even a trace of ketones when he is not

sick, then that means you need to feed him more. If he won't take

them by mouth, then you have to rely on that pump. It is a godsend

for cases like this. Many of our kids have had to wear those pumps

for hours at a time. Max used to be on the pump for 22 hours a

day. If he was off it for any length of time, then ketones formed

almost immediately. obviously does not have any extra

storage of fat, glycogen, etc. so his body is burning up more than

it is getting.

I know that there are doctors who just brush us aside and think we

don't know what we are talking about or that we are overreacting.

But know that your concerns are real and valid. Do what you have to

do. You are right on target.

Jodi Z

[Guest guest]

Missy Anne - from what I've learned about ketones - what you are

doing is perfect. I just read Jodi Z's post too - and she said it

oh so much more eloquently than I - so, I'll leave it to her

<grin>. Keep up the good work - you are doing a great job.

- H

>

> Hello, friends,

> I write in support and advice...My son has been having

> trace ketones for a couple of weeks off and on, Dr. said it wasnt

a big

> deal....Now he is running a temp and his ketones are mod. to

> high.....no one willacknowledge this, should i be doing

something.....I

> have hooked him up to the kangaroo pump with fluids and giving him

> tylinol.....when ever i hook him up to his formula, i can get the

> ketones to come down....so thats just what i do. Do I need to be

> concerned....HELP!

> THnaks Missy Anne (4.5 yrs,28lbs,37 " , RSS??, fundo and g-

> tube.... " failure to Thirve " )

>

[Guest guest]

Jodi,

Thank you so much for your response. I actually got a hold of an endo who

said that i was doing good and is going to see him soon, to teach me how to

corspond his blood sugar levels with the ketones! I think she might actually be

interested in caring! Thanks again for all your support! Wish us luck!

YOu guys are great!

Missy ANne

Jodi Zwain wrote:

Missy Anne,

So long as is tolerating the pump feeds and the ketones

are going away, he is okay. I know it is incovenient, but it may be

that he needs the extra calories for now. And being sick makes

things a bit more complicated. It's great that you are able to use

the pump. If you could not, then you would have to insist that he be

admitted to the hospital and put on an IV.

Meanwhile, if he is spilling even a trace of ketones when he is not

sick, then that means you need to feed him more. If he won't take

them by mouth, then you have to rely on that pump. It is a godsend

for cases like this. Many of our kids have had to wear those pumps

for hours at a time. Max used to be on the pump for 22 hours a

day. If he was off it for any length of time, then ketones formed

almost immediately. obviously does not have any extra

storage of fat, glycogen, etc. so his body is burning up more than

it is getting.

I know that there are doctors who just brush us aside and think we

don't know what we are talking about or that we are overreacting.

But know that your concerns are real and valid. Do what you have to

do. You are right on target.

Jodi Z

[Guest guest]

Missy Anne - I'm interjecting here - but, I think that is such great

news to hear your endo is taking such a positive role in all of

this. And, yes - you are doing great! We knew that! <grin>

Thanks for sharing this info.

- H

> Missy Anne,

>

> So long as is tolerating the pump feeds and the

ketones

> are going away, he is okay. I know it is incovenient, but it may

be

> that he needs the extra calories for now. And being sick makes

> things a bit more complicated. It's great that you are able to use

> the pump. If you could not, then you would have to insist that he

be

> admitted to the hospital and put on an IV.

>

> Meanwhile, if he is spilling even a trace of ketones when he is

not

> sick, then that means you need to feed him more. If he won't take

> them by mouth, then you have to rely on that pump. It is a godsend

> for cases like this. Many of our kids have had to wear those pumps

> for hours at a time. Max used to be on the pump for 22 hours a

> day. If he was off it for any length of time, then ketones formed

> almost immediately. obviously does not have any extra

> storage of fat, glycogen, etc. so his body is burning up more than

> it is getting.

>

> I know that there are doctors who just brush us aside and think we

> don't know what we are talking about or that we are overreacting.

> But know that your concerns are real and valid. Do what you have

to

> do. You are right on target.

>

> Jodi Z

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