In need of some help

August 11, 2003

,

n was in the same boat when he was two. Hadn't grown much at

all for eight months. He weighed 14.5 lbs.

I say try the periactin first, it's definitely worth a try. We also

used Duocal. It's a tasteless powder you can add to food or liquids.

How much does he weigh?

Cindy

>

August 12, 2003

Hello to everyone,

I hope everyone is doing well. Jodi, I was glad to hear that Max is home! I

really need some help, so if anyone can give me advice I would greatly

appreciate it. My son Jonah will be 2 in September and is not gaining weight

well nor is he growing well. We were at our endo last week and he was said

that he would like to see him gain weight, but was not overly concerned. We

said that we wanted to increase his caloric intake before starting GH and he

agreed and when we brought up Periactin, he said that he did not object, but

that the gastro doctor or pediatrician should give it to us. Anyway, today we

saw a new gastro doctor who told us that Jonah is below the 5th percentile for

weight for height still and falling a little below his own curve. Needless to

say my husband and I are very worried. Sorry this is so long, but I am really

concerned. We see an endo in NY that we really like, but we think that we need

to get a little more aggressive, so we are planning on calling DR. H. to set up

an appointment. Here are my questions:

1. Will it take long for us to get an appointment with Dr. H? Can we get her

number?

2. Is ok to give RSS kids Pediasure, I think it was said at the Conference that

Neosure was bad for reflux.

3. I asked at the conference about kids who have a good appetite and eat well

without gastro issues, but don't gain weight. As Dr. H said some RSS kids are

very active and that is certainly Jonah. I think he is burning all the good

stuff he eats. I am very into nutrition, but I guess as said, at this

age not to worry as much about that. Because of his weight Jonah is considered

failure to thrive, yet his cognitive, physical, emotional and social development

is just excelling, so how can he not be thriving? Any thoughts? I am truly

scarred that we are going to need to try a ng tube or eventually a g-tube, it

terrifies us!!

Again, I am sorry this is so long, but today was a hard day. I guess I just

needed to vent a little.

, Jonah's mom

August 12, 2003

Hi ,

When we called Dr H's office for the first time last year, in early Aug, it

took us about a month to get in. She has increased her patient load by 30+

RSS kids since we saw her, so I wouldn't be surprised if it took longer than

that to get in, but it's well worth the wait.

You can contact her at New York Presbyterian Hospital, 525 E. 68th Street,

NYC, NY 10021. Her phone number is .

As I understand it, Dr H isn't fond of PediaSure for our kids. I think she

usually recommends Peptamin Jr. She put on EleCare, a pre-digested,

elemental formula, last year when we went to NY for his triple procedure,

and she didn't say anything about changing formulas even though he's done

too well gaining weight. I can only say that, at $52.50 a can, thank

goodness we don't have to pay for any of it! We get 9 cans a month through

WIC, and another 6 cans a month were approved through our medical supplier.

I, personally, have come to hate the term, Failure to Thrive! There is SO

much more to thriving than just gaining weight! I agree that weight gain is

important, but so are all the areas that you listed. For me, began

thriving when his physical, emotional, and social development, began

catching up, when he began interacting with the world, instead of just

existing.

I understand how scared you are of the possibility of a GT or NG tube, it

seems that most people find this prospect terrifying. By the time

got his GT, I think I had already resigned myself to the fact that he would

need one. Feeding him had become close to impossible. And if it came down to

the choice of losing , or getting the GT, there really was no choice,

right? I can only say that it's not nearly as terrible as it seems, and that

now, it actually scares me more to think of not having the GT. I'm terrified

of the day, when the GT is removed, and his health will depend on getting

everything down him orally!

I would try the periactin, and see how that goes. Most of the people on this

list, seem to have had good success with it. If you don't have the dosing

post left, I'm sure that someone here does. I would just ask. As I

understand it, starting with once a day, quarter or half doses, and slowly

increases it as you go, can help alleviate some of the side effects.

Hope this helps.

Pat (g-ma to , RSS, 19.5 months, 17# 12oz, 28 " , Zantac, Singulair,

GT)

August 12, 2003

--- I just called to get an appt for steven for Dr. H

(initial visits are only done on thursday)I was told I could get in

in October, however because I am a teacher I opted for December for

Christmas break so that I did not have to miss any days. SO that is

what I know.

Madonna

In RSS-Support , " pcpets " wrote:

> Hi ,

>

> When we called Dr H's office for the first time last year, in

early Aug, it

> took us about a month to get in. She has increased her patient

load by 30+

> RSS kids since we saw her, so I wouldn't be surprised if it took

longer than

> that to get in, but it's well worth the wait.

>

> You can contact her at New York Presbyterian Hospital, 525 E. 68th

Street,

> NYC, NY 10021. Her phone number is .

>

> As I understand it, Dr H isn't fond of PediaSure for our kids. I

think she

> usually recommends Peptamin Jr. She put on EleCare, a pre-

digested,

> elemental formula, last year when we went to NY for his triple

procedure,

> and she didn't say anything about changing formulas even though

he's done

> too well gaining weight. I can only say that, at $52.50 a can,

thank

> goodness we don't have to pay for any of it! We get 9 cans a month

through

> WIC, and another 6 cans a month were approved through our medical

supplier.

>

> I, personally, have come to hate the term, Failure to Thrive!

There is SO

> much more to thriving than just gaining weight! I agree that

weight gain is

> important, but so are all the areas that you listed. For me,

began

> thriving when his physical, emotional, and social development,

began

> catching up, when he began interacting with the world, instead of

just

> existing.

>

> I understand how scared you are of the possibility of a GT or NG

tube, it

> seems that most people find this prospect terrifying. By the time

> got his GT, I think I had already resigned myself to the fact that

he would

> need one. Feeding him had become close to impossible. And if it

came down to

> the choice of losing , or getting the GT, there really was

no choice,

> right? I can only say that it's not nearly as terrible as it

seems, and that

> now, it actually scares me more to think of not having the GT. I'm

terrified

> of the day, when the GT is removed, and his health will depend on

getting

> everything down him orally!

>

> I would try the periactin, and see how that goes. Most of the

people on this

> list, seem to have had good success with it. If you don't have the

dosing

> post left, I'm sure that someone here does. I would just ask. As I

> understand it, starting with once a day, quarter or half doses,

and slowly

> increases it as you go, can help alleviate some of the side

effects.

>

> Hope this helps.

>

> Pat (g-ma to , RSS, 19.5 months, 17# 12oz, 28 " , Zantac,

Singulair,

> GT)

August 12, 2003

- Dr. H's number is .

I can tell you are worried, and yes, this is a scary time for any

parent. When we see our child's weight actually graphed!!! and

especially weight for height, which is the true indicator. And

eating is something that we simply can not force on a child, without

severe repercussions.

Having said all this, and knowing where you live, I do believe that

what you need to do is just go see Dr. Harbison. This does not mean

that I don't think that there are other doctors you could see -- but

the fact is that based on the limited history you have written, it

sure sounds like Jonah needs to have some other tests run to rule out

some common GI issues that many RSS/SGA kids have, that could be

impeding his ability to gain weight.

If you lived farther away from New York, you would see local doctors,

and you would probably have to see several different ones. With Dr.

Harbison, she can arrange everything herself -- so I honestly believe

that it will save you time in the long run.

I would NOT worry now about a G-tube. Take it one step at a time. I

wish I could hug you, but know that many of us have been in your

shoes, and we feel for what you are going through.

Salem

> Hello to everyone,

> I hope everyone is doing well. Jodi, I was glad to hear that Max

is home! I really need some help, so if anyone can give me advice I

would greatly appreciate it. My son Jonah will be 2 in September and

is not gaining weight well nor is he growing well. We were at our

endo last week and he was said that he would like to see him gain

weight, but was not overly concerned. We said that we wanted to

increase his caloric intake before starting GH and he agreed and when

we brought up Periactin, he said that he did not object, but that the

gastro doctor or pediatrician should give it to us. Anyway, today we

saw a new gastro doctor who told us that Jonah is below the 5th

percentile for weight for height still and falling a little below his

own curve. Needless to say my husband and I are very worried. Sorry

this is so long, but I am really concerned. We see an endo in NY

that we really like, but we think that we need to get a little more

aggressive, so we are planning on calling DR. H. to set up an

appointment. Here are my questions:

> 1. Will it take long for us to get an appointment with Dr. H? Can

we get her number?

> 2. Is ok to give RSS kids Pediasure, I think it was said at the

Conference that Neosure was bad for reflux.

> 3. I asked at the conference about kids who have a good appetite

and eat well without gastro issues, but don't gain weight. As Dr. H

said some RSS kids are very active and that is certainly Jonah. I

think he is burning all the good stuff he eats. I am very into

nutrition, but I guess as said, at this age not to worry as

much about that. Because of his weight Jonah is considered failure

to thrive, yet his cognitive, physical, emotional and social

development is just excelling, so how can he not be thriving? Any

thoughts? I am truly scarred that we are going to need to try a ng

tube or eventually a g-tube, it terrifies us!!

>

> Again, I am sorry this is so long, but today was a hard day. I

guess I just needed to vent a little.

> , Jonah's mom

>

August 12, 2003