First Time

November 23, 2004

Hi ,

Welcome! I know you will find this group so helpful. I sure have!

The GH sounds amazing! What a change.

I am still learning. We are adopting a child from Korea with RSS.

Take care,

J

November 23, 2004

you say your son gained 10 " how tall was he before?

First Time

>

> Hello everyone. This is the first time I am participating in a

> discussion regarding -Silver. I am so touched by the messages

> I have read so far because I know exactly what everyone is feeling

> and it feels good to know I am not alone.

>

> My son, Colin- was born almost 4 years ago via c-section after

> being induced for 54 hours. My Dr. sent my placenta to the lab for

> testing b/c my son looked thin at 5 lb. 5 oz. He wasn't diagnosed

> with RSS until almost 2 years later.

>

> My husband and I tried for 3 years to get pregnant with the help of

> a fertility specialist and it was the happiest news ever when I was

> expecting. The best part - I was going to have a Christmas baby.

> When we found out it was a boy - we were so excited. All along I was

> experiencing normal feelings with no added misery. It was after my

> 28th week when I started suffering from morning sickness and then

> the gestational diabetes. Needless to say, from the time of the

> diagnosis until Colin- was born, I started to lose weight.

> Immediately following his birth, my weight had dropped 36 pounds. I

> thought his weight was something I did.

>

> Colin- gained weight right out of the gate - he went from 4

> pounds to 6 pound 3 oz at the intial checkup, but that was it. We

> measured, we tracked, we hospitalized him for testing, I stayed up

> 24-hours feeding every minute to get him to take something. No

> crying for food ever. My son's pediatrician started with Failure to

> thrive, but seemed like that wasn't the true diagnosis.

>

> Colin- only has certain characteristics of RSS. His diagnosis

> was hard. It wasn't until his Dr. attended Dr. Harbison's seminar on

> the subject that a lightbulb went off. Thank G/d.

>

> Colin- has been on growth hormones for over a year and has grown

> almost 10 inches. We had the G-I tube put in this past February b/c

> he weighed 18 pounds at 3 years 2 months and I thought I was going

> to lose him. Since the surgery, Colin- has gained over 12 pounds.

>

> It took me a long time to accept that my son will have a different

> life than the other kids. My husband and I knew that although he was

> getting help with eating, we were unsure of the outcome and still

> are. I would like to hear from an adult with RSS. I would like to

> know what the impact of the growth hormones and feeding tubes have

> on a child becoming an adult.

>

> My son spends half his day in a school district pre-k class with

> other developmentally challenged children, but gets speech,

> occupational and physical therapy on a daily basis.

>

> Now that I have rambled on forever, I think that is enough for now.

> Thank you for listening to me go on and on. I am glad I took the

> step and joined the group.

>

> Madden

>

November 23, 2004

Hello everyone. This is the first time I am participating in a

discussion regarding -Silver. I am so touched by the messages

I have read so far because I know exactly what everyone is feeling

and it feels good to know I am not alone.

My son, Colin- was born almost 4 years ago via c-section after

being induced for 54 hours. My Dr. sent my placenta to the lab for

testing b/c my son looked thin at 5 lb. 5 oz. He wasn't diagnosed

with RSS until almost 2 years later.

My husband and I tried for 3 years to get pregnant with the help of

a fertility specialist and it was the happiest news ever when I was

expecting. The best part - I was going to have a Christmas baby.

When we found out it was a boy - we were so excited. All along I was

experiencing normal feelings with no added misery. It was after my

28th week when I started suffering from morning sickness and then

the gestational diabetes. Needless to say, from the time of the

diagnosis until Colin- was born, I started to lose weight.

Immediately following his birth, my weight had dropped 36 pounds. I

thought his weight was something I did.

Colin- gained weight right out of the gate - he went from 4

pounds to 6 pound 3 oz at the intial checkup, but that was it. We

measured, we tracked, we hospitalized him for testing, I stayed up

24-hours feeding every minute to get him to take something. No

crying for food ever. My son's pediatrician started with Failure to

thrive, but seemed like that wasn't the true diagnosis.

Colin- only has certain characteristics of RSS. His diagnosis

was hard. It wasn't until his Dr. attended Dr. Harbison's seminar on

the subject that a lightbulb went off. Thank G/d.

Colin- has been on growth hormones for over a year and has grown

almost 10 inches. We had the G-I tube put in this past February b/c

he weighed 18 pounds at 3 years 2 months and I thought I was going

to lose him. Since the surgery, Colin- has gained over 12 pounds.

It took me a long time to accept that my son will have a different

life than the other kids. My husband and I knew that although he was

getting help with eating, we were unsure of the outcome and still

are. I would like to hear from an adult with RSS. I would like to

know what the impact of the growth hormones and feeding tubes have

on a child becoming an adult.

My son spends half his day in a school district pre-k class with

other developmentally challenged children, but gets speech,

occupational and physical therapy on a daily basis.

Now that I have rambled on forever, I think that is enough for now.

Thank you for listening to me go on and on. I am glad I took the

step and joined the group.

Madden

November 23, 2004

,

I am so glad you have found this group. You have already seen what

a large family we are and how we support each other.

I, as a mom of an older child with RSS, wanted to respond to your

statement about the psychological effects of having a g-tube and

other RSS-related issues. My son Maxwell is 16. I'd love to say

that he has not had any psychological effects, but that is not a

statement I can make. He has and still suffers from anxiety, anger

and self-consciousness, but I feel fortunate that we have been able

to treat him medically and with therapy to help control these

issues. He is willing to go to the psychologist every week, discuss

what needs to be discussed, and to seek help from us or a teacher or

a doctor if need be. It's a lot of work on our part and the

financial toll is remarkable and, usually, overwhelming, but we know

we are raising a much happier and stronger child/teen/person.

As you go through the years with your very-much loved and cared for

son, please be on the lookout for any signs of stress, etc. They

can be difficult to see, but I do think that they are bound to

happen, especially in a child who has a lot of medical needs,

therapies and such. It is NOT a stigma as it used to be. Many more

people need help than are willing to take it or seek it.

I hope you NEVER go through what we have had to deal with regarding

Max both medically and psychologically, but if you do, I am always

willing to listen and offer advice.

Welcome to our family.

Jodi Z

November 24, 2004

Welcome to this wonderful family. I can't thank this group enough for

the knowledge they have given and the friendships that have formed. I

love the fact that I am much more prepared going to doctor's visits.

I also love having the moms with older children and adults here so

that I can ask them anything and they know I am asking without being

nosey.

I cannot comment about a g-tube since my daughter who is RSS

and will be 5 years old Dec 27, was not diagnosed until October 30,

2003. She was diagnosed at 9 months old failure to thrive and tracked

for 9 months by her ped and sent to a GI who found nothing and then

that was it the ped figured that she would just be small. When

was 3 1/2 a heart murmur was detected and then we found out she had a

large whole in her heart and had open heart surgery November 3, 2003.

Her cardiologist was her best advokat to have her seen by a

geneticist and that's how we got to where we are today.

We have only had one endo visit in February because we were dealing

with the surgery and having that heal. We were scheduled to go in Oct

but cancelled to December and once again we are cancelling because we

are going to see Dr. H in NY the end of January and at that point we

will have a better handle on her treatment and such.

Again welcome

B

4 3/4 RSS and Kelli 2 NON RSS