Re: Is it RSS?New to group

[Guest guest]

Hi Anita,

I just wanted to welcome you to our group. I am so glad that you

found us. Hopefully you will learn much here.

As far as your son goes, it is hard for any of us to say whether he

has RSS or not. He certainly does sound like he has some of the

characteristics. The high pitched voice, the lack of appetite, the

curved in pinkies, and the delayed bone age. I don't know what the

ivory epiphyses is though??? As far as him not having asymmetry,

there are some RSS kids that don't seem to show it. My son, ,

who is 3 1/2 was said to have it with one hand and foot being bigger

than the other. And, his legs and arms are also different

thicknesses. But, as far as one leg being shorter, that is not the

case with him. And, is a pretty severe case of RSS.

I hope you can find some answers soon. The only doctor able to

diagnose was Dr. Harbison, in New York City. She is an

endocrinologist that specializes in RSS. She is wonderful and many

of us from the list go and see her. If it is at all possible for you

to take your son to her, I would highly recommend it.

Well, once again, welcome, and enjoy this wonderful group.

Take care,

Jodi R.

's mom

>

> Hello, I am new to the group. I have a 7.5 year old son. He is

105.1 cm

> and 34 lbs. He has not been diagnosed with RSS as of yet. I was

> referred by the Magic Foundation as he has alot in common with RSS

> children. He is seeing a endocrinologist and a geneticist to try to

> determine whats going on. In the meantime I am looking for some

> aupport, and some oppinions. Since you all have some, any

suggestions

> would be helpful!! He has had feeding issues,including having to be

put

> on pediasure, he has a turned in pinky, and delayed bone age. He

has a

> slightly high pitched voice He is 7 with a bone age of 3-4 years

old.

> He has a slightly high pitched voice and is of normal intelligence

he

> had an inguinal hernia repair as toddler( which sometimes I heard

> happens in RSS)and has ivory epiphyses. I have a five year old

neice

> who is taller than him!! They are not sure if it is RSS because he

does

> not have any assymetry that they can tell. They are doing a

chromosome

> check and I am awaiting results. Any advice as to how to for sure

find

> out even in milder case. Please help my instinct says it is RSS,

but

> I'm just not sure. Growth hormone deficency is being determined as

> well. Thanks Anita

>