Primordial dwarfism and other things

[Guest guest]

Hi!

There have been som discussions about primordial dwarfism the latest

days. English is not my mother tongue, so would you please explain

what this means? What's the difference between this kind of dwarfism

and other kinds?

I agree with the other parent, who wrote she'd prefer to say her

child has a growth disorder and not use the term dwarf. It's easier

for people to accept that the child is just small for it's age. Some

people don't really understand and want to make you feel good and

say " Oh, he will catch up. A friend/relative of mine had a

premature baby bla bla, and today she is as tall as her friends. "

When I see people with acondroplasia or other short stature

diagnosis, I think to myself: " Well, my son will have growth

hormones, and in som years he will be of normal height. " This is one

of the reasons why I don't want to say he's a dwarf, because he will

probably not be short all his life.

We are right now into a lot of tests prior to start with hormones.

Do you do that in the other parts of the world? We have tested his

own production of growth hormone, thyroid hormone and cortisone.

They have given him a big dose of insuline to se how he manages

that. He has done skeleton X-ray. All these tests were normal. We

still have to measure his skeletal structure and do two different

sugar test.

An endo in Gothenburg (who's in a SGA team) told us on a conference

that SSR children more often that other children seem to have visual

perception problems. This could cause difficulties for instance when

learning to read. Does anyone of you heard of this or had it tested?

It's over midnight and I really have to go to bed now. Thanks for

all advice and thoughts you all are sharing.

/Camilla (mother of Victor 4 yrs, SSR, hardly 90 cm, 10 kg)

[Guest guest]

Camilla,

I wanted to comment on your question about visual perceptual

problems. I'm a special ed teacher and the mom of Max, 16 with RSS.

I don't know if kids with RSS are more likely to have VP problems or

not. But I do know that they are more likely to have some sort of

learning disability. In other words, they are more at risk. This

results from a theory that when the kids are very young, they have

undiagnosed hypoglycemia. The brain does not get enough of what it

needs to grow, so LD can result. That is a very simple

explanation.

Do all RSS kids have learning problems? No. In fact, we have some

who are very, very intelligent and are way above average.

Just be careful. Some of the old literature does state that RSS

kids are mentally retarded. This is NOT true. The reason for this

statement, as I heard directly from Dr. Silver himself, is that RSS

kids are more likely to have motor delays. It used to be that any

motor delays were immediately markers for mental retardation. They

associated late walking with intelligence. Fortunately, the medical

and educational communities have become better informed and they do

not make these associations.

My son does have LD. He is classified as communication impaired

because of his difficulties with understanding the nuances of

everyday language. He communicates just like any other 16 year old,

but he forgets how to describe things and does not always understand

things that he is taught in school. He requires that subjects be

taught in smaller pieces in smaller groups of kids. The teacher

needs to make sure that he/she says something and then says it again

in different words to make sure he understands it. BUT he has a

great personality and that will get him through a lot.

Jodi Z

[Guest guest]

Jodi ...

What you have said is so true...first, I was born in

1960. There was basically no identification of RSS

when I was a baby/child. Because of my head size, and

the absence of knowledge I was tested for

hydrocephalis. My parents were told that I was Down

Syndrome, because of the slow growth of my facial

bones...ie the bridge and visual appearance of wide

eyes. Not true. I did have to have speech therapy

and had a rough time at school. I probably had LD but

my mother refused to acknowledge this, nor did the

schools test me for special ed, until I got into Jr.

High. Now even though I know I am intelligent, I

still have learning disability. My son who is 9, does

have LD. He is catigorized as having Apraxia, with

speech problems. So I do not know if certain medical

or learning problems pass on to the children.

Laurie

--- Jodi Zwain wrote:

>

> Camilla,

>

> I wanted to comment on your question about visual

> perceptual

> problems. I'm a special ed teacher and the mom of

> Max, 16 with RSS.

>

> I don't know if kids with RSS are more likely to

> have VP problems or

> not. But I do know that they are more likely to

> have some sort of

> learning disability. In other words, they are more

> at risk. This

> results from a theory that when the kids are very

> young, they have

> undiagnosed hypoglycemia. The brain does not get

> enough of what it

> needs to grow, so LD can result. That is a very

> simple

> explanation.

>

> Do all RSS kids have learning problems? No. In

> fact, we have some

> who are very, very intelligent and are way above

> average.

>

> Just be careful. Some of the old literature does

> state that RSS

> kids are mentally retarded. This is NOT true. The

> reason for this

> statement, as I heard directly from Dr. Silver

> himself, is that RSS

> kids are more likely to have motor delays. It used

> to be that any

> motor delays were immediately markers for mental

> retardation. They

> associated late walking with intelligence.

> Fortunately, the medical

> and educational communities have become better

> informed and they do

> not make these associations.

>

> My son does have LD. He is classified as

> communication impaired

> because of his difficulties with understanding the

> nuances of

> everyday language. He communicates just like any

> other 16 year old,

> but he forgets how to describe things and does not

> always understand

> things that he is taught in school. He requires

> that subjects be

> taught in smaller pieces in smaller groups of kids.

> The teacher

> needs to make sure that he/she says something and

> then says it again

> in different words to make sure he understands it.

> BUT he has a

> great personality and that will get him through a

> lot.

>

> Jodi Z

>

>

>

>

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