eating issues _ i am so frustrated (stressed)

[Guest guest]

Hi everyone:

Sorry for the cross posting but I am pressed for time. Just got off the phone

with Claytons Gi - We are now going on almost a week with Clayton taking in a

very limited amount of nutrition. He is drinking less than 12 ounces a day (15

months old) and eating nothing. Everytime we put him in the high chair he

arches and screams and when we try to feed him he screams. Also for the past 5

or so days he has been gagging/retching each time he eats and for hours

afterwards - he did it all last night. He just does not want to eat.

Barry and I were on the phone with the GI (Dr. ) for almost a half hour -

he will see him fist thing tomorrow morning unless he starts to get dehydrated

or worse and then he will meet us at the hospital. He said that he sees a lot

of problems like this with kids with severe allergies and eosinophil gastro.

The main concern is adequte nutrition and this is a tricky issues with the

term tube feeding keep being mentioned. He also mentioned a feedin/behavorial

program at either Kennedy Kreiger or the Children Seashore House. Although

the Seashore House is closer we are more familar with KKI and know Dr. Katz

the GI who runs the program there. I am so frustrated and Dr. siad that

it has nothing to do with anything we did as parents just that he soes not

want to eat and that is hard to explain but he sees it a lot in kids like

clayton. I just do not know what to do - he just refuses to eat and when he

does (even drinks) he is retching. I will let everyone know what Dr. kelly

says tomorrow - but the only thing I am glad about is the Dr. callled me

back within 5 minutes of my call to have him paged - on fathers day

nonetheless and he is a father of 4.

Love,

Sharon

[Guest guest]

Hope things settle down for you soon.

Our 3/yo with eos ESOPHAGITIS is tube fed, but that was NOT a quick fix

by any means. He continues to retch with tube feedings intermittently

and the same on-off before the tube feeds as before.

We have just tried concentrating the formula at 1.5 x and feeding less

volume and THAT seems to be working better.

SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

Hi Sharon,

First, big hug!!! Take care! I know you are having a very tough time.

Last December, was the same way and we had to go the ng tube feeding

in January because of it. Eating caused such pain that he just decided not

to do it anymore(at least that is how I reasoned it). I have heard a lot

of bad things about Seashore because we were going to take there. I

believe it was a few members from the Guardian who gave me info on the

Seashore house.

Last time we were in the hospital (April), they sent a physchologist to

talk to us about . The GI thought that he might know how to get

to drink the formula. He made us feel a lot better though by telling us he

had no clues and doesn't know how we get him to eat what he eats. He

tipped his hat to us and told the GI we were trying our best. That meant a

lot.

Anyways, please keep us informed. We are all very worried about Clayton.

Dawn

----------

> From: SDidinsky@...

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] eating issues _ i am so frustrated (stressed)

> Date: Sunday, June 21, 1998 10:31 AM

>

>

>

> Hi everyone:

>

> Sorry for the cross posting but I am pressed for time. Just got off the

phone

> with Claytons Gi - We are now going on almost a week with Clayton taking

in a

> very limited amount of nutrition. He is drinking less than 12 ounces a

day (15

> months old) and eating nothing. Everytime we put him in the high chair he

> arches and screams and when we try to feed him he screams. Also for the

past 5

> or so days he has been gagging/retching each time he eats and for hours

> afterwards - he did it all last night. He just does not want to eat.

>

> Barry and I were on the phone with the GI (Dr. ) for almost a half

hour -

> he will see him fist thing tomorrow morning unless he starts to get

dehydrated

> or worse and then he will meet us at the hospital. He said that he sees

a lot

> of problems like this with kids with severe allergies and eosinophil

gastro.

> The main concern is adequte nutrition and this is a tricky issues with

the

> term tube feeding keep being mentioned. He also mentioned a

feedin/behavorial

> program at either Kennedy Kreiger or the Children Seashore House.

Although

> the Seashore House is closer we are more familar with KKI and know Dr.

Katz

> the GI who runs the program there. I am so frustrated and Dr. siad

that

> it has nothing to do with anything we did as parents just that he soes

not

> want to eat and that is hard to explain but he sees it a lot in kids like

> clayton. I just do not know what to do - he just refuses to eat and when

he

> does (even drinks) he is retching. I will let everyone know what Dr.

kelly

> says tomorrow - but the only thing I am glad about is the Dr.

callled me

> back within 5 minutes of my call to have him paged - on fathers day

> nonetheless and he is a father of 4.

>

> Love,

> Sharon

>

> ------------------------------------------------------------------------

>

[Guest guest]

In a message dated 98-07-07 06:02:57 EDT, you write:

<< Last time we were in the hospital (April), they sent a physchologist to

talk to us about . The GI thought that he might know how to get

to drink the formula. He made us feel a lot better though by telling us he

had no clues and doesn't know how we get him to eat what he eats. He

tipped his hat to us and told the GI we were trying our best. That meant a

lot. >>

My Gi agrees with your phsychologist - adding that we do our best and there is

no rhyme or reason as to why he refuses to eat. We struggle to get food and

formula in but think that at 15 1/2 months he is able to make the correlation

between eating an pain and thus would rather suffer hunger pains than eat.

Love,

Sharon

[Guest guest]

----------

> From: SDidinsky@...

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com

> Subject: [eosinophilic gastroenteritis] Re: eating issues _ i am so frustrated

(stressed)

> Date: Tuesday, July 07, 1998 8:09 PM

>

at 15 1/2 months he is able to make the correlation

> between eating an pain and thus would rather suffer hunger pains than

eat.

at 15 1/2 months he is able to make the correlation

> between eating an pain and thus would rather suffer hunger pains than

eat.

at 15 1/2 months he is able to make the correlation

> between eating an pain and thus would rather suffer hunger pains than

eat.

That is the point we were at with when we had to decide to go to tube

feeding. He just correlated eating with pain so he decided not to do it

anymore(eat). He still sort of does that. Even with the food elimination

and all the meds, eating is still painful. While on the formula when he

was tube fed, he was great, few stools, very little pain, etc but he just

won't drink the formula and we don't want him to be tube fed all the time.

Dawn

>

>

> In a message dated 98-07-07 06:02:57 EDT, you write:

>

> << Last time we were in the hospital (April), they sent a physchologist

to

> talk to us about . The GI thought that he might know how to get

> to drink the formula. He made us feel a lot better though by telling us

he

> had no clues and doesn't know how we get him to eat what he eats. He

> tipped his hat to us and told the GI we were trying our best. That

meant a

> lot. >>

>

> My Gi agrees with your phsychologist - adding that we do our best and

there is

> no rhyme or reason as to why he refuses to eat. We struggle to get food

and

> formula in but think that>

> Love,

> Sharon

>

> ------------------------------------------------------------------------

>