Re: New to the Group - Newly diagnosed son

[Guest guest]

Hi ,

I have a daughter who is 14 months and has RSS. We do not have her here

yet though, as we are adopting from Korea. Soon, we are hoping :-)

I don't have answers about the tube because our daughter eats well as of

late too. I am looking forward to the answers here.

As far as talking, I have 3 girls and 2 boys. The girls were a lot more

verbal than the boys at one.

I hope you find this place as wonderful as I do.

New to the Group - Newly diagnosed son

My son is 13 months old and was recently diagnosed with RSS.

One of my son's doctors (it's amazing just how many are involved in

his life right now!) referred me to another family near where I live

who also have a child with RSS. They were kind enough to point me to

this group and to the Magic Foundation.

I'm a bit overwhelmed with all of this, but have a couple of

questions that I'm hoping to get some input on.

First, my son seems to be eating well, but I'm wondering if it is

advisable to get him on a feeding tube, anyway? I'm concerned that

he receives good nutrition and I'm not confident that he is, even

though he seems to be eating well.

Second, I'm concerned that he isn't saying any words yet, although he

seems to be on-track developmentally, otherwise. Can anyone give me

some insight into what I can maybe expect in this regard?

Any other advice that you are willing to share with me, I would

greatly appreciate! I just don't know what to expect at this point---

or what I should be doing.....

Thank you!

[Guest guest]

Hi -

Welcome to our group! My son Isaac turned 1 year old last week and

he isn't saying words other than Mama and Dada but his cognative

abilities are the only thing he isn't delayed in (he isn't standing,

crawling, bearing weight on his feet). I think it is different for

all kids not just our special ones. Isaac is still well below 3% but

the Dr. who confirmed our diagnosis at the MAGIC convention last

year said that he was " a RSS kid who eats " and she said there wasn't

any reason for suggest a G-tube. I would discuss it with your

doctor if you are concerned and if your doctor isn't familiar with

RSS they can call MAGIC and request copies of the lectures from last

year's convention for free. Isaac's pediatrician has received his

tapes and he said that he was very glad he called because of the

wealth of information presented.

Hope that helps..you have come to the right place!!

Mimi

mom to Isaac (RSS, Hypothyroidism, 12 mos, 13lbs 4oz, 25 " )

[Guest guest]

I'm one of the " older " moms on this listserve. My son Max is 16 and

has RSS. He has been a complicated case, at best, but all of our

hard work seems to be coming to a head now. He is finally more

independent, EATING and stronger. Whew! (I can't wait for Dr.

Harbison to see him!)

Anyway, regarding a feeding tube. If is eating, gaining

weight and there are no signs of hypo-glycemia, no struggles to get

him to eat, then leave him be for now. You may see a pick-up in his

weight or he may decide to fight back and not eat as much. For now,

if he is happy, thriving and you are content, let it go. I hate to

see children/babies undergo surgery if there are other ways to

approach weight gain. One example is the use of Periactin, an

antihistamine that has a side effect of helping kids gain weight.

may be too young just yet. I can't remember!!! But if you

do use that med, then there is definitely a protocol for giving it -

and I KNOW that one - I helped develop it!

I am also a special ed teacher who specializes in language and

learning disabilities. It is not unusual for a boy, especially, to

not be talking at this age. Is he cooing and making basic sounds

like mama, dada, etc? Does he seem frustrated that he cannot

communicate his needs? If so, then you can try basic sign language

with him. It's very easy to learn. Just stick to the meaningful

things and use the signs as you say the words. It used to be that

signing was NOT recommended for these kids, but times have changed,

thankfully. There is no need for a child/baby to not communicate in

any way just because he cannot say the words!

Hmmm....what else can I help you with? You are already aware of the

hypo-glycemia part. He is old enough to give cornstarch to in his

nighttime bottle, but check with your doctor. We can all make

recommendations, but a medical professional is the one to make the

final decision if you agree to it. Do not do anything that goes

against your gut.

Just keep posting and asking questions. You will find that we are

one big family. We don't always agree, but that is okay. We banter

back and forth, share ideas and experiences and sometimes even have

fun. (That's because Ken is kinda crazy....)

Jodi Z

[Guest guest]

Hi . I'm . My daughter Autumn just turned one on the

20th. She was born weighing 5lbs 6 oz and 18 1/2 inches long full

term. After continuing to grow slowly and fall off the charts even

more, at 7 mos she was referred to a genetisist who took one look at

her and said RSS. She is more of a mild RSS. At one she made it to

about 15 lbs and 26 inches. The docs are considering a feeding tube

for her. We are doing everything we can to avoid it. She started

Periactin(appetite stimulant) at 10 1/2 mos and I noticed no

difference in the way she ate. It works for some, not for others. She

goes through times where she gains no weight for 1 or 2 mos then

practically overnight she makes up for it. The docs worried at first

but now we are getting used to her norm. and not to worry when she

doesn't gain every week. The main thing they are using to determine

her nutrition is her pre-albumin level and that is what will make the

deciding choice. She has a low level which means a protein

deficiancy...when they did the IPG1 (I think that's the name) a

screener for growth hormone deficiency or malnutrition, it came back

low and further tests determined the low pre-albumin. They are doing

another one in a couple of weeks to keep track of her nutrition

level. (she's had 2 so far) I don't know if other RSS kids get

tested for this for malnourishment, I haven't read about it here, I

just know what her docs are doing for her. She goes to Children't

hospital in cincinnati, ohio. Anyway, that is how they are tracking

her nutrition besides the basic food diary and calorie count.

She also is not really talking. She does say mama and dada, she kind

of says them discriminatory, when she sees her dad, it's all dadadadad

and me it's mamamama, but then again she calls other things dadadada

and makes mamama sounds when happy and that's about it. I raised

questions with her doc about it and they handed me their guidlines

for when to be concerned and said she is doing just fine, and she is

babbling, so that is good. I have 2 older sons, one who was severely

behind in language and one who was way ahead, so I don't remember

what is norm for a 1 yr old. I know Autumn is definitly on the later

side for speech development so far but she seems to be doing well

otherwise. Today for the first time she screamed and pointed to her

bowl to let me know she wanted more spagetti(she had dropped most of

it to our dog!)so she's communicating.

She is physically on target. she can sit, crawl, stand alone, walk on

furniture or even holding on to one hand (she hasn't let go yet

though!)

She finally sleeps through the night. She would get up throughout

the night until a little over a month ago, now she sleeps 12 hours.

It's amazing. She always got up every 3 or 4 hours like a newborn

well past the newborn phase. I didn't do anything to help her

sleep,though, it just happend. I know there are things to try, I

just don't know what.

Anyways, welcome to the group! I joined 5 mos ago and everyone here

has really helped me out and been very supportive.

Good luck to you

mom to Autumn 1 yr, 2 boys, and baby on the way!

>

> My son is 13 months old and was recently diagnosed with

RSS.

> One of my son's doctors (it's amazing just how many are involved in

> his life right now!) referred me to another family near where I

live

> who also have a child with RSS. They were kind enough to point me

to

> this group and to the Magic Foundation.

>

> I'm a bit overwhelmed with all of this, but have a couple of

> questions that I'm hoping to get some input on.

>

> First, my son seems to be eating well, but I'm wondering if it is

> advisable to get him on a feeding tube, anyway? I'm concerned that

> he receives good nutrition and I'm not confident that he is, even

> though he seems to be eating well.

>

> Second, I'm concerned that he isn't saying any words yet, although

he

> seems to be on-track developmentally, otherwise. Can anyone give

me

> some insight into what I can maybe expect in this regard?

>

> Any other advice that you are willing to share with me, I would

> greatly appreciate! I just don't know what to expect at this point-

--

> or what I should be doing.....

>

> Thank you!

>

[Guest guest]

Hello and welcome to both and !

What a lucky guy is to have such a caring, involved family. My name

is Pat, and my grandson, , has RSS. I've been an active member here

for over 2 years now, and can only express the greatest appreciation for

this group!! You've found a wonderfully supportive, and informative group of

people!!

is 3 yrs old, and on continual g-tube feeds due to a severe oral

aversion and hypoglycemia. His stats are down in my signature. If I can help

in any way, feel free to ask.

Once again, welcome!!

Pat (g-ma to , RSS, 3 yrs old, 23.5# (10.7kg), 32.8 " (83.3cm),

G-Tube)

[Guest guest]

hi karen!!

your cooper sounds alot like my christopher when he was born. he

too was full term (planned c-section at 38 weeks due to previous c-

section) he was 5lbs 10oz and 18 1/2 " my first son was 9lbs 4oz

and 22 1/2 " so i know your surprise at the weight difference. they

told me christopher was going to be around 8 1/2lbs that is why i

had the planned c-section with him. when i asked how much he

weighed after he was born, i was very surprised by their answere and

we joked about where the rest of the baby was (the " missing " 3lbs)

he lost weight from the start and i had to take him for weight

checks once a week for the first 2 months. the ped had me wake and

fed him every 2hrs. i breastfed him and them had to pump and try to

get more into him with a bottle and a premie nipple. it did pay off

and he finally began to slowly gain weight and grown on his own

curve. he was DX at 2 months when the found his assmentry of his

legs (left side is 1cm shorter than the right). he hit all

milestones on time. good luck!!

jodie c.

> > >

> > > My son is 13 months old and was recently diagnosed with

> > RSS.

> > > One of my son's doctors (it's amazing just how many are

involved

> in

> > > his life right now!) referred me to another family near where

I

> > live

> > > who also have a child with RSS. They were kind enough to

point

> me

> > to

> > > this group and to the Magic Foundation.

> > >

> > > I'm a bit overwhelmed with all of this, but have a couple of

> > > questions that I'm hoping to get some input on.

> > >

> > > First, my son seems to be eating well, but I'm wondering if it

is

> > > advisable to get him on a feeding tube, anyway? I'm concerned

> that

> > > he receives good nutrition and I'm not confident that he is,

even

> > > though he seems to be eating well.

> > >

> > > Second, I'm concerned that he isn't saying any words yet,

> although

> > he

> > > seems to be on-track developmentally, otherwise. Can anyone

give

> > me

> > > some insight into what I can maybe expect in this regard?

> > >

> > > Any other advice that you are willing to share with me, I

would

> > > greatly appreciate! I just don't know what to expect at this

> point-

> > --

> > > or what I should be doing.....

> > >

> > > Thank you!

> > >

[Guest guest]

Wow! They are alot alike! was also delivered via a planned c-

section due to a previous c-section. As they were rolling me into

the operating room, they were estimating 8 1/2 pounds, too! And when

they delivered him, I asked how much he weighed, and when they told

me 5 lbs 11 oz, I said, " No, my baby; How much does MY BABY weigh? " !

I just couldn't believe it.

I was also having to pump and add formula to the breast milk to

increase the calories and to get him to eat more. But the increased

calories only made him throw up. It was all so frustrating, as you

know!

> > > >

> > > > My son is 13 months old and was recently diagnosed

with

> > > RSS.

> > > > One of my son's doctors (it's amazing just how many are

> involved

> > in

> > > > his life right now!) referred me to another family near where

> I

> > > live

> > > > who also have a child with RSS. They were kind enough to

> point

> > me

> > > to

> > > > this group and to the Magic Foundation.

> > > >

> > > > I'm a bit overwhelmed with all of this, but have a couple of

> > > > questions that I'm hoping to get some input on.

> > > >

> > > > First, my son seems to be eating well, but I'm wondering if

it

> is

> > > > advisable to get him on a feeding tube, anyway? I'm

concerned

> > that

> > > > he receives good nutrition and I'm not confident that he is,

> even

> > > > though he seems to be eating well.

> > > >

> > > > Second, I'm concerned that he isn't saying any words yet,

> > although

> > > he

> > > > seems to be on-track developmentally, otherwise. Can anyone

> give

> > > me

> > > > some insight into what I can maybe expect in this regard?

> > > >

> > > > Any other advice that you are willing to share with me, I

> would

> > > > greatly appreciate! I just don't know what to expect at this

> > point-

> > > --

> > > > or what I should be doing.....

> > > >

> > > > Thank you!

> > > >

[Guest guest]

hey karen!!

that is so funny how much alike they were at birth!!! my third son

was 8lbs 6oz and 22 1/2 " so we can see there is definitly a big

difference!! christopher was 14lbs 10.2oz 26 1/2 " at 1yr.!!! feel

free to email me any time at jlcals2003@ yahoo.com (no space after

@) also i wouldnt mind talking by phone if you want. just email me

and i will give you my number.

jodie c

> > > > >

> > > > > My son is 13 months old and was recently diagnosed

> with

> > > > RSS.

> > > > > One of my son's doctors (it's amazing just how many are

> > involved

> > > in

> > > > > his life right now!) referred me to another family near

where

> > I

> > > > live

> > > > > who also have a child with RSS. They were kind enough to

> > point

> > > me

> > > > to

> > > > > this group and to the Magic Foundation.

> > > > >

> > > > > I'm a bit overwhelmed with all of this, but have a couple

of

> > > > > questions that I'm hoping to get some input on.

> > > > >

> > > > > First, my son seems to be eating well, but I'm wondering

if

> it

> > is

> > > > > advisable to get him on a feeding tube, anyway? I'm

> concerned

> > > that

> > > > > he receives good nutrition and I'm not confident that he

is,

> > even

> > > > > though he seems to be eating well.

> > > > >

> > > > > Second, I'm concerned that he isn't saying any words yet,

> > > although

> > > > he

> > > > > seems to be on-track developmentally, otherwise. Can

anyone

> > give

> > > > me

> > > > > some insight into what I can maybe expect in this regard?

> > > > >

> > > > > Any other advice that you are willing to share with me, I

> > would

> > > > > greatly appreciate! I just don't know what to expect at

this

> > > point-

> > > > --

> > > > > or what I should be doing.....

> > > > >

> > > > > Thank you!

> > > > >