Re: Re: new to RSS

[Guest guest]

Hi Jodi,

I just joined this site yerterday, and feel much better about been able to share

my worries with other parents. I have 3 boys , 9,5 and 11 month old ,

diagnosed w/RSS 3 mths ago. You will absolutedly be a good source since you have

an older child.My biggest worrie now is the fact that the GI recommended a GI

tube in 5 weeks if doesn't gain weight.

We're fron Jersey City,NJ and my pediatrician doesn't know anything about RSS.

We see a Genetics at hachensack medical center and the GE in Livingston, So far

the only problem is his weight 13.13 lbs and gained only 2oz in 2 months!. But

the hardest thing is dealing with the people that stare at him every where we

go. To us he is the most precious baby in the world, and we are very bleesed to

have him. Still sometimes I feel so hopeless and desperate that I ask the Lord

to give me strengh. Lets keep in touch .

Thanking you in advance.

Yadira

Jodi Zwain wrote:

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]

Yadira,

Welcome, to the group. My name is Tammy. I have a 21 month old little girl,

, that was diagnosed with RSS when she was 7 months old. We now think

she only has SGA, but she still has most of the same problems that RSS

presents. We also, have a son named . He is 6 non RSS, but has ADHD.

has a g-tube and it has been a life saver. We use it 12 hours a day

from 8pm-8am while she's sleeping. It's also great to use when she's congested

and won't take anything by mouth or has to take a not so good tasting

medication. We just started her on a new formula and she's actually gained

about 1/2 a pound in a week, it usually takes about a month to a month and a

half to gain a pound. Please don't be scared to get a g-tube, it may be the best

thing you can do for him right now. You will be amazed in the change you see in

him, once he starts gaining weight. This group will be such a godsend to you.

Everyone is so supportive and will help you along the way.

Tammy

Mom to 21 mos. 16lbs SGA, g-tube, fundo,GERD and 6 yrs ADHD.

Yadira Siguencia wrote:

Hi Jodi,

I just joined this site yerterday, and feel much better about been able to share

my worries with other parents. I have 3 boys , 9,5 and 11 month old ,

diagnosed w/RSS 3 mths ago. You will absolutedly be a good source since you have

an older child.My biggest worrie now is the fact that the GI recommended a GI

tube in 5 weeks if doesn't gain weight.

We're fron Jersey City,NJ and my pediatrician doesn't know anything about RSS.

We see a Genetics at hachensack medical center and the GE in Livingston, So far

the only problem is his weight 13.13 lbs and gained only 2oz in 2 months!. But

the hardest thing is dealing with the people that stare at him every where we

go. To us he is the most precious baby in the world, and we are very bleesed to

have him. Still sometimes I feel so hopeless and desperate that I ask the Lord

to give me strengh. Lets keep in touch .

Thanking you in advance.

Yadira

Jodi Zwain wrote:

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 Tammy,

Thank you for responding.I feel so much bettter about all this, because now I at

least know that somebody outhere is listening. I love to read the e-mails

because they help me understand and learn more so I can help . At this

point I'm just preparing my self emotionally to face the fact that most likely,

he would get the tube. He has a cold and his chest is congested which causes him

to caugh and puke the little that he eats. But I'll do anything in this world to

help him . By the way what is SGA,? I'm not to familiar with some of the

medical terms. I'll let you know what happens.

Yadira,

Welcome, to the group. My name is Tammy. I have a 21 month old little girl,

, that was diagnosed with RSS when she was 7 months old. We now think

she only has SGA, but she still has most of the same problems that RSS

presents. We also, have a son named . He is 6 non RSS, but has ADHD.

has a g-tube and it has been a life saver. We use it 12 hours a day

from 8pm-8am while she's sleeping. It's also great to use when she's congested

and won't take anything by mouth or has to take a not so good tasting

medication. We just started her on a new formula and she's actually gained

about 1/2 a pound in a week, it usually takes about a month to a month and a

half to gain a pound. Please don't be scared to get a g-tube, it may be the best

thing you can do for him right now. You will be amazed in the change you see in

him, once he starts gaining weight. This group will be such a godsend to you.

Everyone is so supportive and will help you along the way.

Tammy

Mom to 21 mos. 16lbs SGA, g-tube, fundo,GERD and 6 yrs ADHD.

Yadira Siguencia wrote:

Hi Jodi,

I just joined this site yerterday, and feel much better about been able to share

my worries with other parents. I have 3 boys , 9,5 and 11 month old ,

diagnosed w/RSS 3 mths ago. You will absolutedly be a good source since you have

an older child.My biggest worrie now is the fact that the GI recommended a GI

tube in 5 weeks if doesn't gain weight.

We're fron Jersey City,NJ and my pediatrician doesn't know anything about RSS.

We see a Genetics at hachensack medical center and the GE in Livingston, So far

the only problem is his weight 13.13 lbs and gained only 2oz in 2 months!. But

the hardest thing is dealing with the people that stare at him every where we

go. To us he is the most precious baby in the world, and we are very bleesed to

have him. Still sometimes I feel so hopeless and desperate that I ask the Lord

to give me strengh. Lets keep in touch .

Thanking you in advance.

Yadira

Jodi Zwain wrote:

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!

I am new here too and mostly read posts and ask questions.

We are waiting for a diagnosis for our wee guy , Cajun who is 10 mths. I'm

pretty sure it is RSS. He has a lot of the characteristics and some of the kids

whose photos I have looked at could be his identical twin. A few weeks ago he

weighed in at 11lb6oz and was 62 cms in length.

The first pead we saw told me most babies like him were underfed and under

nourished. He is my 8th baby and I am a trained health professional (midwife) so

I did not take kindly to her attitude. It is a 6 mth wait to see the geneticist

but we are going to a diagnostic clinic on October 6th where hopefully I will

have an answer. They have also sent away bloods for chromosome testing and we're

still waiting the results.

It has been winter here and it's been easy to dress him and layer clothes so he

doesn't look so tiny. Am starting to wonder what I will dress him in the summer.

I just hate getting the comments.

How old is he?

Was he prem?

He's tiny isn't he?.......(and on it goes)

What a cute wee baby (can handle that one)

There is such a wealth of info here.

cheers

~~

(in New Zealand)

Re: Re: new to RSS

Hi Tammy,

Thank you for responding.I feel so much bettter about all this, because now I

at least know that somebody outhere is listening. I love to read the e-mails

because they help me understand and learn more so I can help . At this

point I'm just preparing my self emotionally to face the fact that most likely,

he would get the tube. He has a cold and his chest is congested which causes him

to caugh and puke the little that he eats. But I'll do anything in this world to

help him . By the way what is SGA,? I'm not to familiar with some of the

medical terms. I'll let you know what happens.

Yadira,

Welcome, to the group. My name is Tammy. I have a 21 month old little girl,

, that was diagnosed with RSS when she was 7 months old. We now think

she only has SGA, but she still has most of the same problems that RSS

presents. We also, have a son named . He is 6 non RSS, but has ADHD.

has a g-tube and it has been a life saver. We use it 12 hours a day

from 8pm-8am while she's sleeping. It's also great to use when she's congested

and won't take anything by mouth or has to take a not so good tasting

medication. We just started her on a new formula and she's actually gained

about 1/2 a pound in a week, it usually takes about a month to a month and a

half to gain a pound. Please don't be scared to get a g-tube, it may be the best

thing you can do for him right now. You will be amazed in the change you see in

him, once he starts gaining weight. This group will be such a godsend to you.

Everyone is so supportive and will help you along the way.

Tammy

Mom to 21 mos. 16lbs SGA, g-tube, fundo,GERD and 6 yrs ADHD.

Yadira Siguencia wrote:

Hi Jodi,

I just joined this site yerterday, and feel much better about been able to

share my worries with other parents. I have 3 boys , 9,5 and 11 month old

, diagnosed w/RSS 3 mths ago. You will absolutedly be a good source since

you have an older child.My biggest worrie now is the fact that the GI

recommended a GI tube in 5 weeks if doesn't gain weight.

We're fron Jersey City,NJ and my pediatrician doesn't know anything about RSS.

We see a Genetics at hachensack medical center and the GE in Livingston, So far

the only problem is his weight 13.13 lbs and gained only 2oz in 2 months!. But

the hardest thing is dealing with the people that stare at him every where we

go. To us he is the most precious baby in the world, and we are very bleesed to

have him. Still sometimes I feel so hopeless and desperate that I ask the Lord

to give me strengh. Lets keep in touch .

Thanking you in advance.

Yadira

Jodi Zwain wrote:

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 Jodie R,

Thank you so much for your words, they really eased my heart. I just pray that I

can be strong for emotionally if its decided for him to get the tube. I

know that if its the only way for him to have a better chance at life, then I'll

be strong for him. I'm going to try to get an app. w/Dr.H.

God bless your family, and I'll keep in my prayers.

Yadira, mother of

Jodi wrote:

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 ,

Welcome to the group. I can definately understand being upset when being told he

was underfed and undernourished. Aubrey's pediatrician used to tell me stuff

like that all the time and after taking her to the ped, 99% of the time I would

come home furious because I basically felt like a bad parent. We had been seeing

a geneticist since just after Aubrey had been released from NICU due to her soft

spots on her head. I can't really remember all the details of that though. But

anyways she finally decided that Aubrey had RSS. I was so excited that someone

have finally given me a reason as to why Aubrey was so little and wasn't

catching up on her growth like she should. I just wanted to go to the ped and

tell hime " See, see, I am a good parent. " Naturally, Aubrey's ped had never even

heard of RSS. Now he seems pretty understanding to what's going on with her and

even asks me questions about it if he doesn't now. Right after her diagnosis he

gave me a paper with a small little bit about

RSS(maybe 2 paragraphs) and on the next visit I brought him back as much

information as I could find which was pretty informative.Now he never makes any

of those " feed her more " comments, but instead asks about her endocrine and

genetics appointments and how they went. This is a pretty good place on the net

to find lots of information about RSS. And again welcome to the group.

Tonya mom to Aubrey

& Tony wrote:

Hi!

I am new here too and mostly read posts and ask questions.

We are waiting for a diagnosis for our wee guy , Cajun who is 10 mths. I'm

pretty sure it is RSS. He has a lot of the characteristics and some of the kids

whose photos I have looked at could be his identical twin. A few weeks ago he

weighed in at 11lb6oz and was 62 cms in length.

The first pead we saw told me most babies like him were underfed and under

nourished. He is my 8th baby and I am a trained health professional (midwife) so

I did not take kindly to her attitude. It is a 6 mth wait to see the geneticist

but we are going to a diagnostic clinic on October 6th where hopefully I will

have an answer. They have also sent away bloods for chromosome testing and we're

still waiting the results.

It has been winter here and it's been easy to dress him and layer clothes so he

doesn't look so tiny. Am starting to wonder what I will dress him in the summer.

I just hate getting the comments.

How old is he?

Was he prem?

He's tiny isn't he?.......(and on it goes)

What a cute wee baby (can handle that one)

There is such a wealth of info here.

cheers

~~

(in New Zealand)

Re: Re: new to RSS

Hi Tammy,

Thank you for responding.I feel so much bettter about all this, because now I

at least know that somebody outhere is listening. I love to read the e-mails

because they help me understand and learn more so I can help . At this

point I'm just preparing my self emotionally to face the fact that most likely,

he would get the tube. He has a cold and his chest is congested which causes him

to caugh and puke the little that he eats. But I'll do anything in this world to

help him . By the way what is SGA,? I'm not to familiar with some of the

medical terms. I'll let you know what happens.

Yadira,

Welcome, to the group. My name is Tammy. I have a 21 month old little girl,

, that was diagnosed with RSS when she was 7 months old. We now think

she only has SGA, but she still has most of the same problems that RSS

presents. We also, have a son named . He is 6 non RSS, but has ADHD.

has a g-tube and it has been a life saver. We use it 12 hours a day

from 8pm-8am while she's sleeping. It's also great to use when she's congested

and won't take anything by mouth or has to take a not so good tasting

medication. We just started her on a new formula and she's actually gained

about 1/2 a pound in a week, it usually takes about a month to a month and a

half to gain a pound. Please don't be scared to get a g-tube, it may be the best

thing you can do for him right now. You will be amazed in the change you see in

him, once he starts gaining weight. This group will be such a godsend to you.

Everyone is so supportive and will help you along the way.

Tammy

Mom to 21 mos. 16lbs SGA, g-tube, fundo,GERD and 6 yrs ADHD.

Yadira Siguencia wrote:

Hi Jodi,

I just joined this site yerterday, and feel much better about been able to

share my worries with other parents. I have 3 boys , 9,5 and 11 month old

, diagnosed w/RSS 3 mths ago. You will absolutedly be a good source since

you have an older child.My biggest worrie now is the fact that the GI

recommended a GI tube in 5 weeks if doesn't gain weight.

We're fron Jersey City,NJ and my pediatrician doesn't know anything about RSS.

We see a Genetics at hachensack medical center and the GE in Livingston, So far

the only problem is his weight 13.13 lbs and gained only 2oz in 2 months!. But

the hardest thing is dealing with the people that stare at him every where we

go. To us he is the most precious baby in the world, and we are very bleesed to

have him. Still sometimes I feel so hopeless and desperate that I ask the Lord

to give me strengh. Lets keep in touch .

Thanking you in advance.

Yadira

Jodi Zwain wrote:

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