To

[Guest guest]

,

In my experience, it is the endocrinologist who should be taking

charge of Maddison's care and making sure she gets what she needs.

It is this doctor who is the one to check her growth, development

and metabolism. I can't remember if you have one on your team, so

please fill me in on that.

The hypoglycemia/ketone issue is controversial among doctors. While

Dr. Harbison has documented that RSS kids do have issues with

spilling ketones, hypoglycemia and becoming acidotic, there are

those medical professionals who do not believe it is a component of

RSS. She, and I and many others, believe that all children at least

until the age of three should be monitored for this. It is easy,

painless and of very little cost. Some children, I should tell you,

have to be monitored until they are older, like my son Max. Every

time he gets sick, he spills ketones and must be monitored.

Sometimes it happens even if he is well. I am good at detecting

them, though, because to me his breath smells like nail polish

remover.

Anyway, spilling ketones is one of the first signs of your child

becoming hypoglycemic/acidotic. It is the body's signal that there

is not enough fuel for what it needs. The brain will take what it

needs first and then start using the reserves to get what it needs.

Our children have little body fat, so once that is used up as the

extra fuel, the system goes a little haywire.

Checking is as easy as can be. Just purchase a package of

ketosticks at your local pharmacy. They are usually where they

store the diabetic supplies. Collect a bit of urine from Maddison,

even if you have to put a cotton ball in her diaper to do it. Drop

the urine onto the pad on the ketostick, wait 15 seconds and

compare the color of the pad to the colors on the chart on the

bottle. If she has ketones, don't fret. Feed her something,

preferably liquid, and try to flush them out. Also, try protein and

complex carbohydrates. Sugary things will quickly eliminate the

ketones, but they will not stay away because they are burned up too

quickly. You need more complex foods to help.

IF the ketones do not go down, then she will probably need IV fluids

with 10% dextrose. You would need to contact your doctor who would

tell you to take her to the ER and then proceed from there. Email

Salem at magicrss@ mindspring.com and she will have a

letter, I believe, that Dr. H. has written for us to take to the ER

with our RSS children.

I hope I have helped you a little bit. If you have more questions,

just ask!

Jodi