Re: New to the Group - Newly diagnosed son

[Guest guest]

Thanks, ! I, too, have been tracking my sons caloric

intake, but didn't know about the screening for the pre-albumin.

I'll talk to my sons Ped about it.

Autumn and sound quite similar. was born full-term at

5lbs 11 oz and 18 1/4 inches long. My first child was born full term

at 9lbs 11oz, 22 inches. So we were rather shocked when came

out so small. His height and weight continued to fall off the chart

as he got older, too. He would drink his formula, but never more

than an ounce or two. And I had to keep him on a schedule because he

would never indicate that he was hungry. All of which was just so

strange after having my first child.

After a litteny of tests, including MRI's, the doctor's convinced us

to see a geneticist. Who also took one look at him and said " RSS " .

We were shocked because we thought genetic problems were only ever

hereditary. We had no idea they could just " happen " .

Now, at 13 months, he's almost 15lbs and is 27 inches tall. I've

also noticed that he will go a month or two with no growth, and then

have a little " spurt " . In tracking his caloric intake, our GI told

us that an " average " child at his age (I won't say " normal " ), takes

in approximately 100 calories per kilogram of weight. Which would

mean should take in about 700 calories a day. He usually does

between 800 and 1000 per day. But I understand that children with

RSS don't digest the food, nor metabolize it as well as " average "

children do. That's why I am concerned about the nutrition he's

getting. So I appreciate the advice on the pre-albumin test!

babbles alot. And seems to say Mama and Dada discriminately.

But, that's about it as far as language goes. We think we hear him

say other words sometimes, but it's not clear if he's just imitating

the sound. But with the feedback I've gotten from everyone here, I'm

not as concerned about that I as I was!

He's also sitting up, crawling, pulling up, cruising, and taking a

few steps on his own (up to 5 or 6 at a time).

He hasn't ever been a good sleeper. He would wake up several times a

night, until just recently. Now he only wakes about once a night,

and sleeps a total of 7 to 9 hours. He doesn't do much in the way of

napping during the day. He'll take 1 or 2 naps of 20-40 minutes

each, usually. I've tried the cornstarch in his formula at night,

but it doesn't seem to make a difference. Speaking of which, I'm

still feeding him formula (in addition to other liquids). Is Autumn

still on formula? I'm wondering if there is something

different/better I should switch him to? Or how long I should

continue the formula?

Sorry to ramble on! Thanks again for the help and advice!

( 13 mos; 14 1/2 lbs; 27 inches)

PS - when's your baby due? :-)

> >

> > 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 ,

Autumn is on formula now (mixed to 24 cal per oz) but we are getting

ready to switch her over to Peptamin Jr which is 30 cal per oz.. Our

doc was saying to do pediasure but I've read a lot on this listserve

about how peptamin is better. We are lucky to get WIC and with a

docs prescription, they give us the Peptamin which is pretty

expensive.

Autumn only took 2-3 oz per feeding also. I couldn't get her to

take more. She doesn't take in enough calories, she was about 200

under her projected needed intake. That was a couple of months ago.

My 2 boys were born at 7 11 and the other at 7 14 and I was shocked

at Autumn's size, I can only imagine what you felt after having your

first at 9 11!

My baby (#4) is due on July 30th. I am 13 1/2 weeks now and I am

counting down the days where I can find out boy/girl. We found out

with the first 2, didn't with Autumn and that was torture for me but

I wanted to experence that, and now that that's over, I will never do

it again! Just knowing that I can is too difficult to pass up again.

you can email me privatly if you'd like at

anderkat3@...

mom of Autumn, 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!

> > >