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RSS and dwarfism

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Jodi R. and others,

While the older literature refers to RSS as a form of dwarfism, it

is not really technically correct. A dwarf is someone who is out of

proportion and looks more like someone with achondroplasia. Our

kids fit the " midget " category, which is short stature and in

proportion. Short stature is under 4'11 " .

HOWEVER, you and your kids will definitely benefit psychologically

if you refer to having RSS as a " growth disorder. " It sounds

better, people don't jump to conclusions and envision one of the

seven dwarfs from Snow White, and it is just plain easier to

comprehend. It is amazing how a little change in wording can make

all the difference in the world.

Meanwhile, speaking of psychological terms and situations, I have

Max home AGAIN because he is vomiting. (Never in my life did I

think that throwing up and vomiting would be such a normal and

regular part of my vocabulary!!!) I truly believe that this is

psychologically based. Each time Max is out of school for more than

a couple of days, he goes through this on the second day back. Dr.

H. prescribed the Transcop patch that is put behind the ear for

motion sickness, so I am trying it out today to see if it helps.

The only problem is that it says it takes 4 hours to be effective.

At least there are no ketones for now. I think I will put him

on " gut rest " and bolus feed him through his g-j button. He HATES

the pump, so this may work. Sigh. There is always something.

Jodi Z.

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