RE:no subject Rita

[Guest guest]

Hi Rita this is Mom to s I am very

interested in what you said in this post I have the same problem's my

got Diagnoised with RSS last year at age 3 by our endo and I

was finally so relieved to find out what " he had " he has so many

different thing's wrong(since birth) but yet never could get an

answer until we saw an endo and he looked at him and said yes RSS

well I found the Magic Foundation and we went to the convention and

DR.H said she ? his diagnosis? So I have felt at a loss again but my

endo still thinks it is possible RSS he has speech delays still and

he is now 4 1/2 he has developmental delays, hypospadias and

incurving of the 5th finger,esopugitus reflux,triangulare face and

short stature among many other things and charecteristics!!! they

still aren't exactly sure what he has but they endo want's to start

Growth hormone shot's even though he isn't GH deficent, so I know how

you feel mine is still currently in speech ( Hugs to you )

prevacid and zoloft 25lbs and 33 inches wears 3to 6 to 12 month

clothes and 5 infant

shoe!!

> Hi Everyone.

>

> I first started on this support list a couple of years ago when

> there was the possibility of my son having RSS. Last year, the

> geneticist tested him for chromosome 7 abnormality and found that

he

> tested normally. Therefore, not giving a dignosis of RSS. We were

> frustrated and tired and decided to take some time off from the

> whole " what does he have " question. Now that some time has gone by

> I thought I'd look into RSS again, because I just have that feeling

> that he may have it... Josh is now 4 1/2 and he is still below the

> 0% in height and weight. The only characteristics that he has

> associated with RSS is short stature, developmental delays, bone-

age

> delay and a small triangular face. He does not have an incurved

5th

> finger. The reason for this message is to see if other parents

with

> a child formally diagnosed with RSS have discovered that

development

> delays (especially speech)have persisted after the age of 4 or

> more?

> Thanks for listening.

> Rita

[Guest guest]

,

Thanks for responding to my message. I'm sorry to hear that you are

in the same boat as us as far as a diagnosis. I've contemplated on

numerous occasions about contacting Dr. H, but since we live in

Washington State; NY is a little far for us to travel. I just don't

know that the Dr.'s in Washington are too experienced with RSS. You

mentioned that your son has speech delays also. How much does he

talk? Josh at this point is only talking in 3 word phrases and is

very nasily; therefore making it very hard to understand him. Josh

only had feeding problems at a very young age. He has no problems

with food now. He is 30 pounds and is approx. 36 " tall and is in a

size 6 (infant) shoe. Josh's endo recommends GH also and Josh isn't

GH deficient either; my husband and I have gone back and forth

regarding GH and have decided that it's at least worth a try. We

don't want Josh asking us when he is 13, " why didn't you do

something? " Good luck to you; I know what a difficult decision GH

is.

> > Hi Everyone.

> >

> > I first started on this support list a couple of years ago when

> > there was the possibility of my son having RSS. Last year, the

> > geneticist tested him for chromosome 7 abnormality and found

that

> he

> > tested normally. Therefore, not giving a dignosis of RSS. We

were

> > frustrated and tired and decided to take some time off from the

> > whole " what does he have " question. Now that some time has gone

by

> > I thought I'd look into RSS again, because I just have that

feeling

> > that he may have it... Josh is now 4 1/2 and he is still below

the

> > 0% in height and weight. The only characteristics that he has

> > associated with RSS is short stature, developmental delays, bone-

> age

> > delay and a small triangular face. He does not have an incurved

> 5th

> > finger. The reason for this message is to see if other parents

> with

> > a child formally diagnosed with RSS have discovered that

> development

> > delays (especially speech)have persisted after the age of 4 or

> > more?

> > Thanks for listening.

> > Rita

[Guest guest]

--Hi again yes it is very frustrating and confusing not knowing so

that we can give him the right treatment, someone on here mention

Dubowitz syndrome and I have been doing some reasearch on this he has

alot of charecteristicts but we are waiting to see the genectics for

that one, but the Endo is still saying RSS? Yes I was so happy to go

to the convention! I am looking forward to going and learning so much

more again next year. Do you think you could attend? My

speaks very well he has a lisp but can say everything o.k. but it has

taken years of speech to get him to this point!Yes his feeding

problems were at infancy also and he projectile vomited and they just

kept changing his formula's little did we know he had reflux!! Now he

has holes in his esopugus and in his stomach lining and he has been

on Prevacid for 2 years the doctors had to do the endoscope

colonoscopy to find this out! They said if it doesn't get better they

will have to do surgery, it doesn't seem to bother him I guess he was

just so used to it already! Yes they are wanting to start the Growth

hormones shots in 5 months I have been praying about this it is a

hard decision because of the g h defieiencient test being neg. to I

just don't understand it if they have everything in their brain to

produce the hormones to grow then why aren't they growing? He hasn't

grown but 1/2 an inch in 2 years? So like you said try it but it is

scarry ? I am so glad I found you to talk to you can e-mail me

privatley if you want to also and 's picture is on here under

s (all about me) Thank you and Hugs to you

to!!!

- In RSS-Support , " Rita " wrote:

> ,

>

> Thanks for responding to my message. I'm sorry to hear that you

are

> in the same boat as us as far as a diagnosis. I've contemplated on

> numerous occasions about contacting Dr. H, but since we live in

> Washington State; NY is a little far for us to travel. I just

don't

> know that the Dr.'s in Washington are too experienced with RSS.

You

> mentioned that your son has speech delays also. How much does he

> talk? Josh at this point is only talking in 3 word phrases and is

> very nasily; therefore making it very hard to understand him.

Josh

> only had feeding problems at a very young age. He has no problems

> with food now. He is 30 pounds and is approx. 36 " tall and is in a

> size 6 (infant) shoe. Josh's endo recommends GH also and Josh

isn't

> GH deficient either; my husband and I have gone back and forth

> regarding GH and have decided that it's at least worth a try. We

> don't want Josh asking us when he is 13, " why didn't you do

> something? " Good luck to you; I know what a difficult decision GH

> is.

>

>

>

>

> > > Hi Everyone.

> > >

> > > I first started on this support list a couple of years ago when

> > > there was the possibility of my son having RSS. Last year, the

> > > geneticist tested him for chromosome 7 abnormality and found

> that

> > he

> > > tested normally. Therefore, not giving a dignosis of RSS. We

> were

> > > frustrated and tired and decided to take some time off from the

> > > whole " what does he have " question. Now that some time has

gone

> by

> > > I thought I'd look into RSS again, because I just have that

> feeling

> > > that he may have it... Josh is now 4 1/2 and he is still below

> the

> > > 0% in height and weight. The only characteristics that he has

> > > associated with RSS is short stature, developmental delays,

bone-

> > age

> > > delay and a small triangular face. He does not have an

incurved

> > 5th

> > > finger. The reason for this message is to see if other parents

> > with

> > > a child formally diagnosed with RSS have discovered that

> > development

> > > delays (especially speech)have persisted after the age of 4 or

> > > more?

> > > Thanks for listening.

> > > Rita