RE: Blood sugars

June 11, 2005

Amber,

I think you are confused. If a child is spilling ketones, the blood

sugar is not high. In fact, it can be in the normal range or quite

low. It means that the body has used up its stores of

glycogen/sugars in fat and other organs. The body is now turning to

using protein in the muscle to feed itself, thus the spilling of

ketones, or protein, into the urine.

When this happens, you do need to try to get that sugar replaced.

For an older child like yours, you can try glucose gel that is just

squeezed into the inside cheek to get started. It is immediately

absorbed by the body and could help, especially if she is lethargic

and/or cranky. But if the ketones are going up to moderate or even

large, then you need rehydration with IV and 10% dextrose.

It's a confusing and complicated thing. We have it down to a

science now with Max. It always means that he has a stomach bug of

some sort and it's an immediate 5 day minimum hospital stay. It has

taken years for us to convince those stupid residents in the ER that

we know the routine, that a few hours of rehydrating him in the ER

will not work. We now just tell them to call the pediatrician,

check his hospital records and they will get affirmation from their

own kind - not us stupid parents who they think are over-dramatic

and don't know what we are talking about.

I do have to add, however, that there have been times when we have

been able to avoid the hospital trip if Max is drinking enough.

Fluids are so important. It's when he cannot keep a thing down that

we know what the drill is.

What is going on with you? Are you having trouble with ketones?

Jodi Z

June 11, 2005

Amber,

There are two conditions that you are speaking about (I think!)>

1. Our kids can get hypoglycemic. This is about blood sugar. It means

that their blood sugars tend to get low when they do not eat often enough,

about every 2-4 hrs for MOST RSS kids. You can check blood sugars with a

glucometer. We got one from our endo. You prick their finger and test a

drop of blood. Normal is between 80-120. My 3yr old Alyssa gets

symptomatic( cranky, lethargic) of low blood sugar when hers is at about 85.

Feeding her a complex carbohydrate will make it come back up. Feeding her a

protein with it will keep it up. Often with just a sugar/carb snack the

blood sugar will quickly drop down again a short time later, so it is

important to make it a carb/protein. With Alyssa she will eat a cookie and

drink some milk. Fruit and yogurt. If it has dropped it is important to

get it back up quickly, but also to keep it stable. Many alternate carbs

and proteins every couple of hours throughout the day. This usually does

the trick. There are some kids (Pat can chime in here) that need more than

this so you should talk with your Ped. And endo.

2. The ketones are a byproduct that signals a body is using muscles for

food instead of the food he's eaten or stored fats. This is bad obviously

because our kids have no fat stores to begin with and usually aren't too

crazy about eating either. Eating every few hours will usually solve this

problem as well, but not always. Especially if our kids are sick or simply

do not eat enough. You can test ketones by putting a cottonball in

Grayson's diaper and squeezing the urine on a ketostick ( you can get them

at any drugstore).

I believe MOSt of our kids do not have problems with their insulin

initially, but as they get older they have a propensity for insulin

resistance. They don't take insulin. If I'm wrong someone please correct

me!

These are the very big reasons why many of our kids have feeding tubes.

They simply can't/don't eat enough to keep these problems away. I know with

Alyssa she gets hypoglycemic after not eating for about 5hrs. She no longer

spills ketones because she receives formula overnight. Before her tube she

nearly constantly spilled ketones and had frequent episodes of hypoglycemia.

She was just Grayson's age when we finally had a tube placed. Kids that are

good eaters are usually able to control these issues. It's the kids with

severe delayed gastric emptying (like Alyssa) and/or severe reflux (making

feeding painful) that usually need a tube. (These conditions are both

usually diagnosed by a GI doc. A pediatrician can order the tests if they

are needed.

It is important that your doctors assist you in monitoring these things.

Lasting damage can occur over long periods of time if these issues are not

dealt with. The convention will go into all of this and you will learn so

much!!!!

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of chavisamber

Sent: Saturday, June 11, 2005 1:43 PM

To: RSS-Support

Subject: Blood sugars

Hello everyone I have a question, I just learned of Graysons

condition and about the low bloodsugar, Does anyone have to have

insulin as well to help control their childrens sugars. I saw where it

says if ketones are in the urine their bloodsugar is high and my need

to increase insulin. Help I am confused!!! Also do I need to talk to

my Pediatrician. thanks AmberC (austin 7 non-rss Grayson 21 months

rss)

_____

June 12, 2005

Thanks so much for the info. I have just started with the realization that

Grayson is having blood surgar problems,even though I thought a while back, and

the doctor said no. But We have had a feeding tube for ten months now. We were

doing the feeding pump at night but Grayson ripped his tube out once and kept

getting the tubing wrapped around his neck. He is a terrible sleeper. I am

waiting for the peditrician to get back from vacation Tuesday to talk all about

this, I am not even sure she has the official diagnosis yet. Plus I cant see my

endo again till Aug. They said they were booked and we only have one in the

area. But thanks again. Amber( Grayson 18lbs 12oz 29 in g-tube fundo,meds

Dayna Carney wrote:Amber,