Re: Questions for the Group

[Guest guest]

Corey

- take a deep breath <smile> - you have come to the right place.

First, I used to live in the Chicago area - I have a great Endo to

refer you to.........Dr. Zimmerman of Children's Memorial - downtown

Chicago. He is awesome. I have full confidence in him (that's

saying alot - I'm EXTREMELY PICKY). If he's hard to get into to -

try Dr. Levy. (Funny story - when I saw Dr. Levy for

a " second opinion " - he laughed at me because he said I was

seeing " the best " Dr. Z) But, I like Dr. Levy alot too and would

choose either one.

My son is 28 months. He gains about 1 pound every couple of months -

if I'm lucky. He does not have a tube. There are many parents

here who would have better advice than I on that. Ian is currently

20 lbs. I will say that there was a time in Ian's life that the

tube was an option and if I had the choice to go back - I would have

decided to do it. You have to remember - it's not about us - it's

about them and what is best for them - not our schedules, feelings,

fears or anything else and we have to remember what we do for them

now - will help them in the future. It's hard - but important to

remember. Ian, fortunately, must have ESP and realized he better

start getting back on track and started to gain weight - he's on a

fine line - but, holding his own.

I think the GI doc needs to know about his bowel movements. I know

that's typical for an infant (when they start with hard foods, i.e.,

peas) but I'm not sure at this age.

You are not alone. Great questions. Keep asking. We will keep

praying.

- Thinking of you.

- H

> Hi All,

>

> I am the mom of a 24 mth (Sept 24th) RSS boy, Justen, he is

> currently 15 lbs, and 29 inches. I, like everyone else, have been

> to nutrition, speech, OT, PT, and other then his size, he is a

very

> normal little boy. He has never been hospitalized, and since

having

> ear tubes placed, rarely gets sick. Our problem now is that

> although Justen has steadly been growing on his on little growth

> chart, he has been 15-16 lbs for the last year. We can not get

him

> over the 16lb mark. He was referred to a GI a year ago, who said

> besides having RSS, he saw no other metabolism problems. Well,

now

> once again, because of the plateau, his Ped has referred him to

> another GI. This one wants to give him the tube, and like the few

> other moms on here, I am terrified!! Not only do I not want him

to

> become dependent, because he does eat, I am scared of school and

day

> care problems that can occur with the tube. Has anyone

expierenced

> having to send their RSS kid to a sitter or school with a tube?

> The GI is also referring him to Endo, who from what I hear will

> recommend a GH. I have read the post that some of you guys praise

> the hormone. Does the hormone work for both weight and height?

Or

> just height? Another concerned, is that I have noticed in some

> diaper changes, that his bowels seem to contain undigested food,

> like whole pineapples. It looked as if it just came right out,

has

> anyone expierenced that? I know a lot of you, praise Dr H, but

is

> there anyone living in Chicago or surronding areas, that know of

any

> other good Endo's? Sorry for the long post, but it's just so

> frustrating that this syndrome is not widely known, and so many

> doctors are clueless.

[Guest guest]

Hi All,

Thank you all SOO much for the advice, I am feeling a lot better. I

am also a little excited, because I am currently awaiting an appt.

for Dr. Zimmerman, or partner, so I will let you all know how that

goes. I am now very excited, because at least I know that he is

familiar with RSS. Can anyone give me a little more insight on

this " caloric catchup " , and how to go about doing that? Is it just

adding the high fat foods to the diet? Justen already does 2-3

Pediasures a day, he eats pretty good, just not a lot. He can eat

whole tv dinners, he loves fruit, chicken, of course french fries.

He eats quite a bit of things, which is why I am always in awe that

he hasn't gained on his doctor visit. I will certainly start trying

the Half and Half, and the powder milk.

> > Hi All,

> >

> > I am the mom of a 24 mth (Sept 24th) RSS boy, Justen, he is

> > currently 15 lbs, and 29 inches. I, like everyone else, have

been

> > to nutrition, speech, OT, PT, and other then his size, he is a

> very

> > normal little boy. He has never been hospitalized, and since

> having

> > ear tubes placed, rarely gets sick. Our problem now is that

> > although Justen has steadly been growing on his on little growth

> > chart, he has been 15-16 lbs for the last year. We can not get

> him

> > over the 16lb mark. He was referred to a GI a year ago, who

said

> > besides having RSS, he saw no other metabolism problems. Well,

> now

> > once again, because of the plateau, his Ped has referred him to

> > another GI. This one wants to give him the tube, and like the

few

> > other moms on here, I am terrified!! Not only do I not want him

> to

> > become dependent, because he does eat, I am scared of school and

> day

> > care problems that can occur with the tube. Has anyone

> expierenced

> > having to send their RSS kid to a sitter or school with a

tube?

> > The GI is also referring him to Endo, who from what I hear will

> > recommend a GH. I have read the post that some of you guys

praise

> > the hormone. Does the hormone work for both weight and height?

> Or

> > just height? Another concerned, is that I have noticed in some

> > diaper changes, that his bowels seem to contain undigested food,

> > like whole pineapples. It looked as if it just came right out,

> has

> > anyone expierenced that? I know a lot of you, praise Dr H, but

> is

> > there anyone living in Chicago or surronding areas, that know of

> any

> > other good Endo's? Sorry for the long post, but it's just so

> > frustrating that this syndrome is not widely known, and so many

> > doctors are clueless.

[Guest guest]

Yes, Matty went to school with the tube. Some years the nurse even tube fed

him after he attempted to eat lunch. Not a big deal. I just went in and

made sure she knew what to do if it fell out (left an extra tube with her)

and made sure she knew how to do a tube feeding. It will all work out.

Judy

Questions for the Group

> Hi All,

>

> I am the mom of a 24 mth (Sept 24th) RSS boy, Justen, he is

> currently 15 lbs, and 29 inches. I, like everyone else, have been

> to nutrition, speech, OT, PT, and other then his size, he is a very

> normal little boy. He has never been hospitalized, and since having

> ear tubes placed, rarely gets sick. Our problem now is that

> although Justen has steadly been growing on his on little growth

> chart, he has been 15-16 lbs for the last year. We can not get him

> over the 16lb mark. He was referred to a GI a year ago, who said

> besides having RSS, he saw no other metabolism problems. Well, now

> once again, because of the plateau, his Ped has referred him to

> another GI. This one wants to give him the tube, and like the few

> other moms on here, I am terrified!! Not only do I not want him to

> become dependent, because he does eat, I am scared of school and day

> care problems that can occur with the tube. Has anyone expierenced

> having to send their RSS kid to a sitter or school with a tube?

> The GI is also referring him to Endo, who from what I hear will

> recommend a GH. I have read the post that some of you guys praise

> the hormone. Does the hormone work for both weight and height? Or

> just height? Another concerned, is that I have noticed in some

> diaper changes, that his bowels seem to contain undigested food,

> like whole pineapples. It looked as if it just came right out, has

> anyone expierenced that? I know a lot of you, praise Dr H, but is

> there anyone living in Chicago or surronding areas, that know of any

> other good Endo's? Sorry for the long post, but it's just so

> frustrating that this syndrome is not widely known, and so many

> doctors are clueless.

>

>

>

>

>

>

>

>

[Guest guest]

Corey - I started typing a message and it " dissappeared " ! So, I'm

not going to repeat myself in case it comes back somehow! LOL

I'll just say I'm glad you got an appointment. Just remember,

choosing a physician, specialist, or whoever is a choice for your

child and your family; and, as long as you are all happy with your

choice, the healthcare of your child will be easier to deal with.

We add heavy whipping cream to Ian's milk. He's on a different

supplement called Nutren Jr. suggested by our Nutritionist at Easter

Seals in IL. We do things like - salami/cream cheese for lunch to

increase fat and protein.

Our best to you.

- H

> > > Hi All,

> > >

> > > I am the mom of a 24 mth (Sept 24th) RSS boy, Justen, he is

> > > currently 15 lbs, and 29 inches. I, like everyone else, have

> been

> > > to nutrition, speech, OT, PT, and other then his size, he is a

> > very

> > > normal little boy. He has never been hospitalized, and since

> > having

> > > ear tubes placed, rarely gets sick. Our problem now is that

> > > although Justen has steadly been growing on his on little

growth

> > > chart, he has been 15-16 lbs for the last year. We can not

get

> > him

> > > over the 16lb mark. He was referred to a GI a year ago, who

> said

> > > besides having RSS, he saw no other metabolism problems.

Well,

> > now

> > > once again, because of the plateau, his Ped has referred him

to

> > > another GI. This one wants to give him the tube, and like the

> few

> > > other moms on here, I am terrified!! Not only do I not want

him

> > to

> > > become dependent, because he does eat, I am scared of school

and

> > day

> > > care problems that can occur with the tube. Has anyone

> > expierenced

> > > having to send their RSS kid to a sitter or school with a

> tube?

> > > The GI is also referring him to Endo, who from what I hear

will

> > > recommend a GH. I have read the post that some of you guys

> praise

> > > the hormone. Does the hormone work for both weight and

height?

> > Or

> > > just height? Another concerned, is that I have noticed in

some

> > > diaper changes, that his bowels seem to contain undigested

food,

> > > like whole pineapples. It looked as if it just came right

out,

> > has

> > > anyone expierenced that? I know a lot of you, praise Dr H,

but

> > is

> > > there anyone living in Chicago or surronding areas, that know

of

> > any

> > > other good Endo's? Sorry for the long post, but it's just so

> > > frustrating that this syndrome is not widely known, and so

many

> > > doctors are clueless.