Re: new to RSS

[Guest guest]

hi jamie!!

my son christopher is 4yrs and has rss, we live in northwest nj. tell

us more about your son and ask any questions you may have!! welcome to

the group!! there are alot of family's in your surrounding area!! we

are actually in the process of planning a gathering and a 5k walk/run

for rss and the magic foundation for oct. 23rd in nj. feel free to

email me at jlcals2003@ yahoo.com (no space after @) have you checked

out the magic foundation's web site www.magicfoundation.org also what

endo do you see, you are actually living in the best spot possibly dr

harbison the us expert on rss is in Mt. Sinai hosptial in nyc!!!!

jodie c

[Guest guest]

Hi ,

Welcome to our group. I hope we can answer any questions you have.

I noticed you live in the Metro NY area. There are several on this

list who live very near you.

Also, you are very lucky. One of the experts on treating children

with RSS practices in NY. Her name is Dr. Harbison. She changed

office locations in the past year, so I don't know her address or

phone number. Before the day is through, someone (probably Jodi Z)

with provide you with both.

Please give us some details about your son. How much does he weigh?

How tall is he? How big was he at birth etc. How did you find out he

has RSS?

My son is 8. He is 47.75 inches tall and weighs about 47 pounds. He

is on growth hormone and takes periactin (an appetitte stimulant)

once a day. He is doing very well in school but still receives some

speech therapy and O/T. Otherwise, he is fine.

I hope this helps.

Ken M

> Hi. My son is 3 1/2 and was recently diagnosed w/ RSS. I live in

the

> NY metro area and was wondering if there is anyone who would be

> willing to talk. Since RSS is so rare, I haven't been able to find

> anyone that's dealing w/ it.

>

[Guest guest]

Oh, my goodness! Another ! I'm never going to be able to

keep you all straight! For awhile it was Jodi(e)'s that were in

abundance.

Welcome to our group. This is the best group there ever was. You

will find support and answers and hints like you never imagined.

Have you checked out the Magic Foundation yet? That's another good

source. I'm sure someone else told you about it by now, right?

Where in the NY Metro area do you live? I'm in Madison, NJ. It's

just outside of town, if that helps. Do you see Dr. Harbison

at Mt. Sinai? Please tell us more about you.

My son Max has RSS and is now 17. It's been a rough ride with him,

but we are finally seeing our way clear. He is one of the

older " kids " around here, so we've experienced a lot that others

have yet to go through. I also have a daughter Jenna who is almost

20. She does not have RSS, though. Gosh, I feel so old all of a

sudden. Weren't my kids just babies????

Jodi Z

[Guest guest]

Hi

Welcome to the group.

Our son Liam is 4, we live in Australia, so this group is far

reaching, and very helpful. A world of information!!!

Please ask lots of questions, we love to share what we have learnt

along the way.

Liam turned 4 in June. He is 10.5kg and 87cm. Loves to swim, thinks he

can play soccer, turns on the computer and sets games up for himself,

can nearly write his name,and will try anything(no fear). He also has

a gtube for feeding, growth hormone shots, reflux and gut motility

problems(constipation), but nothing stops him.

Hope we can help you

Have a good weekend!

Jody(mum to Liam and cameron 7)

> Hi. My son is 3 1/2 and was recently diagnosed w/ RSS. I live in

the

> NY metro area and was wondering if there is anyone who would be

> willing to talk. Since RSS is so rare, I haven't been able to find

> anyone that's dealing w/ it.

>

[Guest guest]

Welcome to the group, . I have a son, , who is 3 years

old. His current weight is 23 lb.s 10 oz. and is 32 1/2 " tall now.

He is fed through a J tube since he won't eat by mouth. He is trying

to eat a little, but has issues with chewing and we are seeing a

speech therapist to help work on this. had some pretty heavy

issues at birth and the following months, as he was not diagnosed

with RSS until he was 17 months old and super small and barely

living. But, he is doing much better now. sees Dr. Harbison

who is in New York, who I have seen others telling you about, so I

won't repeat. But, she is wonderful and you should try to get your

son in to see her if you wish.

Also, I have seen other telling you about The MAGIC Foundation. They

are a great organization and they have so much information on RSS to

offer you. You should look them up on their website.

www.magicfoundation.org. Many of us on here are memebers and attend

a convention that is held in Chicago near the end of July every

year. Many of us just returned from this years convention a couple

of weeks ago. A great opportunity to meet and talk to others dealing

with RSS.

Once again, welcome to this group and if you continue to read here,

you will learn so much.

Take care,

Jodi R.

Yes, another Jodi! )

> Hi. My son is 3 1/2 and was recently diagnosed w/ RSS. I live in

the

> NY metro area and was wondering if there is anyone who would be

> willing to talk. Since RSS is so rare, I haven't been able to find

> anyone that's dealing w/ it.

>

[Guest guest]

Welcome My name is chrissy and my daughter is 3 1/2 and has RSS we

live in Philly and would love to chat. Hope you find this group helpful

Chrissy mom to.........

Louis 6

Madison 3 1/2 RSS

Shane 1 1/2

10 mons

[Guest guest]

Hi . Welcome. You have definately come to the right place.

Please feel free to ask any questions. I have a 2 yr old with RSS. I

also have a 3 1/2 yr old without RSS - and sometimes its nice to talk

about him too (because this is such a FUN age isn't it?)

Our best to you.

> Hi. My son is 3 1/2 and was recently diagnosed w/ RSS. I live in

the

> NY metro area and was wondering if there is anyone who would be

> willing to talk. Since RSS is so rare, I haven't been able to find

> anyone that's dealing w/ it.

>

[Guest guest]

Hi, I,m from NJ and my 11 month old son was diagnosed 3 months ago. Hes doing ok

except for not gaining weight, he is 13.13 lbs and scheduled for a G tube in 5

weeks if he doesn't put on some weight. he drinks Pediasure and not much of

solids. All we have to do is take it day b day and hope that theres no

complications. I have 2 other boys 9 and 5.My genetics doc told us the most

important thing is to give him a lot of calories.I joined the support site just

yesterday and it feels good to be able to share this feelings and emotions with

others.I was so scared and panicy when we first found out, but now I'm confident

that hes going to be OK.

japarish44 wrote:Hi. My son is 3 1/2 and was recently

diagnosed w/ RSS. I live in the

NY metro area and was wondering if there is anyone who would be

willing to talk. Since RSS is so rare, I haven't been able to find

anyone that's dealing w/ it.

[Guest guest]

Hi Yadira

Welcome to the group. I live in Toronto, Canada, but my son, Adam is almost

13 and he has RSS. I have one older daughter who is 16 and very, very tall!

You will find out shortly that there are many families of RSS children in

the NJ/NY area. In fact, the best doctor, Dr. Harbinson, is in New York. She

has over 100 RSS patients and has made it her life work. If you want to see

the expert, you need to see her. I'm sure others will chime in on her

specifics if you want to contact her.

I did want to steer you towards the Magic Foundation. They are based in

Chicago and have a wealth of information on children with growth disorders,

including RSS. Their website is www.magicfoundation.com and it costs

something like 25 or 30 dollars for a year membership but it's invaluable.

They have a yearly convention in Chicago (every July) and it has been SO

beneficial to my son (we have gone down twice now)........to meet other kids

like him and for me, to hear experts talk at the presentations and to

network! Please consider joining Magic.

My son did not have a feeding tube. He was lucky. But there are tons of

parents here who have had to go through the G tube; so once they read your

email, I'm sure they will be responding to you.

Good luck, hang out here, we are a great bunch and do try to check out

Magic!

Debby in Toronto.

Re: new to RSS

> Hi, I,m from NJ and my 11 month old son was diagnosed 3 months ago. Hes

> doing ok except for not gaining weight, he is 13.13 lbs and scheduled for

> a G tube in 5 weeks if he doesn't put on some weight. he drinks Pediasure

> and not much of solids. All we have to do is take it day b day and hope

> that theres no complications. I have 2 other boys 9 and 5.My genetics doc

> told us the most important thing is to give him a lot of calories.I joined

> the support site just yesterday and it feels good to be able to share this

> feelings and emotions with others.I was so scared and panicy when we first

> found out, but now I'm confident that hes going to be OK.

>

> japarish44 wrote:Hi. My son is 3 1/2 and was

> recently diagnosed w/ RSS. I live in the

> NY metro area and was wondering if there is anyone who would be

> willing to talk. Since RSS is so rare, I haven't been able to find

> anyone that's dealing w/ it.

>

>

>

>

>

>

[Guest guest]

Yadira,

Yes, your son is going to be okay. We have all come to learn that

our kids are going to make it just fine in life. The early years, we

have heard, seems to be the toughest years.

My son, , is 3 years old and he has had some sort of feeding

tube since birth. He wasn't able to breastfeed or take a bottle

without choking or turning blue. The feeding tube isn't as bad as

they seem to be. Actually, they can be a real Godsend at times.

Especially when they have to take medicine that they normally

wouldn't take on their own. You just put it in the tube!

doesn't eat much at all by mouth. Nothing that amounts to any

calories towards his diet anyway. But, that is because he has had a

tube since birth and has needed so many extra calories just to put on

an ounce or two. He has a pretty severe case of RSS, so our main

goal when he was younger was to get the calories into him and get

some weight on him so he could do the things he was supposed to be

doing. Not worry about him eating orally at that point.

We see Dr. Harbison that others have told you about and she has

really done wonders for . I am so thankful for her, and

because she literally saved 's life, I don't trust many other

doctors for the major decisions regarding 's growth and

development. For example, she is the only one I trust to tell us

when to start growth hormone and what dosage to start out on.

It is natural to be nervous and not want to have a feeding tube

placed in your child. But, sometimes it is the best decision you can

make for your child. Eating is hard for our kids, and they have to

eat so much more than the avergae child to gain and grow. It can be

very exhausting for them, and for you to have to get them to eat more.

Welcome to the group. I am sure others will share their experiences

with feeding tubes with you.

Take care,

Jodi R.

's mommy

Hi. My son is 3 1/2 and was

recently diagnosed w/ RSS. I live in the

> NY metro area and was wondering if there is anyone who would be

> willing to talk. Since RSS is so rare, I haven't been able to find

> anyone that's dealing w/ it.

>

>

>

>

>

>

[Guest guest]

hi yadria!!

i am also from nj, but northwest nj (warren cty.) my 4 1/2 yr old son

has rss, i also have a 7 and a 2 yr old both non rss boys. welcome to

the group!! we are actually in the process of planning a gathering for

rss families and a walk-a-thon for magic for oct. 23 near my house!!

so far we have 6 families coming!! i would love for you to join us!!

email me at jlcals2003@ yahoo.com (no space after @) if you would like

more info!! ((HUGS))

jodie c