- ketones

[Guest guest]

,

Even though Brady has good blood sugar levels, he can still spill

ketones. What does all of this mean? Well, I will try to explain,

but Salem is much better at this than I. She will be back

tomorrow, the 13th, so I'm sure she will correct anything I may get

wrong. (I'm in such a daze with all we are dealing with with Max

that I am not thinking clearly just yet.)

When a child's body uses up fat stores, the brain will look for

other sources of finding food for itself. The brain will take all

it can get at the risk of draining all other resources. Our RSS

kids are low in fat to begin with. When those stores are used up

and there is a need for more energy sources, the body will begin to

burn muscle. That is when ketones are spilled into the child's

urine. It is a sign that protein/muscle is being used as fuel.

This can throw the whole body system out of whack and lead to

something called acidosis. In extreme cases, like what happened

with Max, the child will begin to vomit and it cannot be stopped

until sugars and fluids and electrolytes are given via IV to restore

the balance.

How do you check for ketones? Well, you buy ketosticks at the

drugstore - no prescription necessary. They are near the diabetic

supplies. You simply collect a bit of urine and either drip it onto

the little pad on the strip, or dip the stick into the urine. Since

Brady is probably in diapers still, you can put some cotton balls

into his diaper and take them out when they are wet. It's easy,

painless and safe to do.

Now, what do you do if Brady has ketones? First you try to feed

him - especially liquids that have some sugar in them. Most of the

time this is enough. It is just a sign that he needs to be fed and

it can be a precursor to hypoglycemia. Sometimes, however, the

ketones go to large and you just cannot get them down. That is when

the child needs IV fluids with 10% dextrose. We have been doing

this for so long with Max that I can call the shots and the doctors

just sign the orders. The pediatrician and GI know me and Max well

enough that when I say he needs to be admitted, they go along with

it.

I don't want to scare you, but you really need to know about this.

I believe there is something in the MAGIC library about the protocol

that Dr. H. recommends, but I am not sure. I'm not good at keeping

up with that stuff because I know the routine so well.

I know that many people on this listserve can help you as well.

Please forgive me if I am not answering, in advance, all the

questions you probably have. Just post them and we will all help

you to understand. And don't fret about it, either. I know it

sounds scary, but it does not have to be. You are doing a great job

with Brady. You just need to educate yourself as most of us have

and you will be fine.

BTW, it used to be that women, mostly, on diets would want their

bodies to go into this state to lose weight. It's not the best way,

though. Also, if Brady does start to spill ketones, smell his

breath. When people spill ketones, they develop a very sweet,

fruity smell to their breath. I think it smells more like acetone,

or nail polish remover, but doctors all call it sweet and fruity.

I'm so good at it now that I can even tell what level they are when

I smell Max's breath. What a talent I have!

Jodi Z.