Re: help - anyone have 10 minutes for my sister?

[Guest guest]

>

>

> Hi Everyone!

>

> My sister (I had posted about this before) is doing her final paper

> on RSS and massage therapy….does anyone have 10 minutes to answer

the

> below???? These are questions from the professor….

>

> Please send to:

> Marisaboston@ hotmail.com (no space)

> Thanks, , mom to 5 and Emerence 2, RSS/SGA 21 lb 32.5 "

> 29 months

>

> What kinds of issues do people of this population deal with?

> Besides small stature, there is reflux, gut dismotility, chronic

ear infections, asthma (exasurbated by the reflux), assemytry of the

body and limbs, low blood sugar, lack of weight gain, and probable

early puberty which cuts growth potential down. (These are the

physical issues, there are many emotional issues that go along with

chronic doctor visits, medication, shots, and just being smaller than

peers.

> How is it to live with this condition?

It is a curse and a blessing. Day to day can be very difficult with

illnesses, medications and doctor visits. But what an incredible

blessing to have been able to meet so many wonderful people that we

would have never been able to meet.

> Daily concerns?

The amount of medication that I am putting into my child and what

that might mean for his future. Finding clothes to fit. People

staring. Anger issues for my child at why he has to take all the meds

and be smaller than everyone he knows his age and even younger.

Finances when so much is spent on gas to get to doctors, doctors,

medication, etc....

> Condition poorly understood or well-established?

> In most circles, medical and laypeople alike know very little about

RSS if they have even heard of it at all.

> Possible emotional ramifications?

It is very difficult for a boy to be so small and fragile. It is also

very difficult for him to think of himself as being so different from

all the other kids he sees on a daily basis. Who knows what the

future holds, but he has a lot of anger, but then again he also has a

lot of understanding for others who are hurting!

>

> How is the mobility?

> As an infant he was delayed. Now he is perfectly as mobile as any

of his peers, although he tires much more quickly than they.

>

>

> Medical help available, what kind?

We have a great medical support team, although they are not

completely knowledgable about RSS. We keep in touch with a terrific

doctor who takes great interest in RSS and seems to lead the pack in

what treatments should be followed.

> Treatments that people with RSS undergo?

G-Tubes, fundoplication surgery, growth hormone therapy, breathing

treatments, ear tubes, some even endure leg lengthening surgery for

severe assymetry.

>

> What stresses and strains do RSS kids/people deal with?

> Again, being different, taking so much medication and shots and

going to doctors more often and being sick more often. (from my 9

year old, " I get the stress of being made fun of because of how small

you are. "

>

> What assumptions are often made about people?

> Most people think he is younger than he is, and often question

me, " are you sure? " when I tell them his age. Then they think he

doesn't " look " like a dwarf so that can't be it. They also think if

they had a week they could make him eat, or fatten him up!!!! (I have

even heard of children being removed from their parents by Child

Protective Services because they think the parents aren't feeding

their children.

>

>> Does our culture have any biases or value judgements?

>Yes! They think that smaller means they can't do anything or are not

as smart as others. They are wrong!

>

> Do people in this population deal with a larger cultural belief

> system about them?

>

> Yes, same as above. Some people are just stupid! Stature has

nothing to do with intelligence.

>

>

> Are there sensitive terms/language that describe this population?

Yes, my son is small for his age, he is not a midget, he is not even

a little person, he is a beautiful loving smart sensitive little boy!