The trouble with no RSS diagnosis

[Guest guest]

While it is true that the day-to-day treatment of your child is no

different whether they are diagnosed with RSS or not, there are

problems that arise from the lack of a diagnosis.

What do you do when your kid is sick and spilling Ketones and you

can't use the 'blue letter' because he 'doesn't have RSS'. How do

you even explain why you were testing for ketones in the first

place?

How do you get the doctor to treat your child differently in the

event of a surgery? It is tough enough to get the doctors to pay

attention and agree with what we know needs to be done when you have

a diagnosis and have all your ducks in a row.

What happens when your kid is so tiny and skinny and diagnosed with

low-muscle tone and no one will discuss GH because he is 'just a

little, skinny kid'?

Sometimes, I think it must be just a little bit better to be

diagnosed.

Conny, Great-aunt to , undiagnosed skinny kid, 22.2 lbs and

about 32 inches.