(No subject)

[Guest guest]

Hi Tina,

Sounds like frustrating times at your house. We went through the same thing

with the skin and tape.

What alarms me the most about your tube is it sounds like you are tube

feeding her an elemental diet and simultaneously letting her eat???? What is

the purpose of THAT. I would think during this time, you would want to see

if she would improve OFF food proteins while being tube fed. Then if she

did improve (biopsy proven)... then place a G tube and keep her mainly on

the elemental diet.. slowly trying one food at a time and removing it if

symptoms. This way you keep the nutrition up and can start/stop food trials

at will without driving the kid completely nuts. I dont understand letting

her eat during a trial of tube feeding????

One thought you may want to consider is that depending on how much she gets

via tube, she may not need as much during the day and gets fuller quicker.

This may be a really good thing depending on your goals.

Another thought is that most pasta is wheat-based and wheat is a big

allergic food for most kids. Have you tried just giving her

sugar/water/artificial flavor and laying off all food proteins for a while

to see if that works?

I know the frustration of being in between GI and allergy as this disease is

an allergic disease manifested in the GI tract. What we need is a

gastroenterology allergist (of which there is no such thing). For my kids,

the GI is in charge and allergy consults but for me, the allergist is in

charge and the GI consults (same allergist). the reason for this is that

the peds GI know more about EE and the adult GI is clueless. The Peds GI

have educated my allergist who is struggling to help me find a suitable

formula. (no luck yet).

Good luck. We found that changing the tape every day and keeping it as dry

as possible helped.

Steph

Re: [eosinophilic gastroenteritis] (no subject)

>From: Timmyandtina@...

>

>hello this is Tina mom to Alyssa. I was wanting to find out if any of the

>kids have reactions to the tape (ng tube) We had taped Alyssa's tube to he

>back and it looks horrible. It almost looks like she has been burnt. I

feel

>terrible about this. The GI doc said to put neosporin on it so it dries

>up.but she still says it hurts. any ideas? Also how long should we wait

for

>the formula to start helping via ng tube before we request g tube? she

has

>had it a month and she is still not able to handle a lot of her safe food?

>she could have chicken and now it makes her sick? same with pasta. she is

>only hooked up anight and she eats during the day of course it is only

chips.

>she has lost some weight not enough to " worry about " yet. and how do we

>handle the fact her drs don't agree on any thing. the allergist wants to do

>one thing and then the GI doesnt think it is it severe enough and the ped

>doesn't have a clue so what do we do? Thanks Tina mom to ALyssa EE, EG,

>Reflux, Asmtha, a lot of allergies,

>

>

[Guest guest]

Hi on the subject of the tube that is what we thought, we started out the

tube for only two wks and we were going to the g tube and well here it is a

month later and we stil have the ngtube. the reason being that Alyssa's

immune system is so supressed that they dont wont to risk infection. sounds

crazy to me but she had been on prednisone for 9 months. The GI keeps putting

her on Strange foods foods that she had tested postive for allergies and so I

try I have now began to question. He always says that this is a hard case adn

all we can do is try. " she will grow out of this I don't have any school age

kids with this so maybe that will help. " but the allergist says " I believe

that if she was going to out grow this she would have already started but

she seems to be getting more allergies. " some kids can never eat real food

with this. see two different stories and treatments. the allergist said she

needs tpn the gi said the tube.so were do we go? we already drive 31/2 hours

to see the GI the other would be in Houston. that is over 4 hours. so we are

stuck.could you explain to me how to start feeding her. There are so many

things that she can't have so I am not sure that she will have a balanced

diet I know that with out the formula she wont. She is allergic to corn,

beans, peas, any meat, wheat, dyes, peaches,oranges, almost every thing. can

you help me it seems that the GI cant and I wont let her get in the shape she

was. Thanks, Tina mom to ALyssa 3 1\2

[Guest guest]

Well the dreaded phone call came today about 3:00 that the Gi doc thinks it

is time to move to the G-tube. I have been expecting this to come and now

that it is being arranged I am scared to death. I think that when we went to

the dr last week with all the infections and now with her back being infected

from the tape. He said enough was enough. THe Gi said I was hoping that with

the formula it would kick start her system but she is getting worse instead

of better and that is because she is no longer on the prednisone. At this

point we have no other choice and she will probley be on this for a least

another year. Talk it over with your husband and I will call back tommorrow

or Thursday and get things rolling for the first of the week. Has anyone had

doublts about this and how do you get over them? Thanks Tina mom to Alyssa

reflux, asmtha, EE, EG delayed gastic empting, lots and lots of Allergies.

[Guest guest]

Dear Tina;

We are in somewhat of the same boat. Except that we are dealing with short

bowel syndrome on top o+f it. We are trying to wean our son off TPN and yet

are having a bad time feeding him foods he can tolerate. I got such a list

of nono's that will make my head spin. Now they are talking necate 1 but I

can't afford it and their is no coverage at all. Sofar the dietician

together with the GI are trying to figure things out. I am slowly weaning

him off TPN but he is starting that lovely downward spiral of loosing

weight and its so hard to get it back ther then upping the TPN.>I will try

t keep in touch. if I have any special ideas I will let yoou know. Right

now he get half strength of vivonex. He can't tolerate much more

unfortunately.

All we can do is try. Jut hang in there

Beatrix Mom to 6 HD short bowel G tube TPN and so on

[Guest guest]

Tina,

I wish it were true that kids outgrow this. I am 36, my oldest is 16.

Obviously, this is not always the case. Why does Alyssa have to have

anything besides elemental formula (which one is she on by the way).. I am

also assuming that she has EG and not solely EE.

If she has " normal " GI motility (everything moves the way it should) she she

NOT require long-termTPN and you should fight this to the end (Over time,

TPN can destroy vital organs, particularly the liver - and life-threatening,

sometimes fatal, infections from the central lines are not uncommon).

I think I have an idea what the GI is thinking. THere is no proof that

skin-test positivity to any certain food has anything to do with the eos

inflammation. It just seems to make sense to avoid these foods because we

can't be certain. Our GI originally told us to try food by food no matter

what the skin tests showed and stop them if symptoms. We have been doing

that for over 6 months now and have only found one food in one kid that

doesnt cause symptoms. We've given up on ever finding a real food diet for

us and now are concentrating on finding if given in tiny amounts we can

tolerate any food at all (specifically for social situations, i.e. can they

handle a couple of french fries or a few potato chips once a week, once a

month.... etc). We do not give the kids any dairy products whatsoever and

they freely abide by this, as they all have tried it and sufferred the

almost immediate consequences.

Our Allergist told us to do the same thing EXCEPT he advised NOT to let the

kids even try the foods they were skin test positive to. (we did anyway..

the symptoms were the same with foods skin test negative and positive --

chest pain, difficulty swallowing, feeding intolerance to their formulas and

GI dysmotility, and with some, diarrhea).

Have you tried just simply tube feeding her and laying off the food proteins

(give her Kool-aid, popsicles without juice, some candies without food

proteins, etc). I would have a LOT of concern about a physician

recommending you put a child on TPN before you try 100% tube feeds of a

purely elemental formula (not vivonex).

(eos esophagitis/GT, former TPNr)

(Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian

Re: [eosinophilic gastroenteritis] (no subject)

>From: Timmyandtina@...

>

>Hi on the subject of the tube that is what we thought, we started out the

>tube for only two wks and we were going to the g tube and well here it is a

>month later and we stil have the ngtube. the reason being that Alyssa's

>immune system is so supressed that they dont wont to risk infection.

sounds

>crazy to me but she had been on prednisone for 9 months. The GI keeps

putting

>her on Strange foods foods that she had tested postive for allergies and so

I

>try I have now began to question. He always says that this is a hard case

adn

>all we can do is try. " she will grow out of this I don't have any school

age

>kids with this so maybe that will help. " but the allergist says " I believe

>that if she was going to out grow this she would have already started but

>she seems to be getting more allergies. " some kids can never eat real food

>with this. see two different stories and treatments. the allergist said

she

>needs tpn the gi said the tube.so were do we go? we already drive 31/2

hours

>to see the GI the other would be in Houston. that is over 4 hours. so we

are

>stuck.could you explain to me how to start feeding her. There are so many

>things that she can't have so I am not sure that she will have a balanced

>diet I know that with out the formula she wont. She is allergic to corn,

>beans, peas, any meat, wheat, dyes, peaches,oranges, almost every thing.

can

>you help me it seems that the GI cant and I wont let her get in the shape

she

>was. Thanks, Tina mom to ALyssa 3 1\2

>

>

[Guest guest]

In a message dated 9/28/99 3:29:33 PM Pacific Daylight Time,

Timmyandtina@... writes:

<< THe Gi said I was hoping that with

the formula it would kick start her system but she is getting worse instead

of better and that is because she is no longer on the prednisone. At this

point we have no other choice and she will probley be on this for a least

another year. >>

Tina,

We will be praying for you all. how does hubby feel about this? My friend

has a 3 yr. old who is failure to thrive, she had neogastric tube for a long

time, then went to G tube. She says the G button is so much better. eaiser

to feed, not as messy, looks better too.

Cathy

[Guest guest]

In a message dated 9/28/99 7:17:41 PM Central Daylight Time, Dcjatben@...

writes:

<< how does hubby feel about this? >>

Tim thinks it is about time for a different option, I agree with him but

still the thought is a little scary. I mean goodness Alyssa is only three

and she has only been out of the hosptial a month. I haven't told her

anything about this yet. I don't think I will until the day we are going in

thanks, Tina

[Guest guest]

In a message dated 9/27/99 1:05:43 PM Central Daylight Time,

onegreatmom@... writes:

<< Are you using Duoderm and Tegaderm? >> WE are using both one on top of

the other. sounds nutty but that is how the home heath people do it.

[Guest guest]

Hello -

I don't know how far away Austin TX is for you, but my son's surgeon moved

there in July. Her name is Dr. Margo Hendrickson, and she is one of the most

caring and compassionate doctors I know.

I know you read the word " surgeon " and wonder why I say anything. I do for

two reasons: she is not a " surgeon's surgeon " which means that her

philosophy is to treat a child with any non-surgical procedures before

surgery. This means that she personally will order testing for you, go over

those results, etc. When my son had a major choke episode at 15 months, the

GI office told us it would be 4 weeks before we could get in there. So I

called Dr. Hendrickson, and she saw us two days later, ordered all of

's testing (endoscopy, gastric emptying, swallow study, ph study, etc)

and went over all the results with us. Then she referred us to the GI she

felt was the best, and got us an appointment within a week.

Granted, this isn't typical, but she's just that wonderful.

The second reason why I think you should give her a call is because one of

her special interest areas is GI problems. She is a long-term reflux

sufferer herself, and is very compassionate to children who have GI

problems. Since this is her major area of interest, she can refer you to an

excellent GI, if this is something you feel you need to do.

Here is her office information:

Austin Pediatric Surgery Association

1111 W. 34th Street #307

Austin, TX 78705

[Guest guest]

h my god;

Margo Hendrickson was a resident here at Sick Childrens hopital in Toronto

and I remember her so well. I bet you like her. She and I had some real

fights and good times together over . I surely never will forget her

as long as I live. I remember when had some bad seizures and she

asked me if I finally panicked. to her I was the mother of cool and

control. Yep what a joke. ha ha. I am glad she is doing well. She is a good

surgeon and she had some good teachers.

beatrix

At 02:30 PM 9/28/1999 -0700, you wrote:

>

>

>Hello -

>

>I don't know how far away Austin TX is for you, but my son's surgeon moved

>there in July. Her name is Dr. Margo Hendrickson, and she is one of the most

>caring and compassionate doctors I know.

>

>I know you read the word " surgeon " and wonder why I say anything. I do for

>two reasons: she is not a " surgeon's surgeon " which means that her

>philosophy is to treat a child with any non-surgical procedures before

>surgery. This means that she personally will order testing for you, go over

>those results, etc. When my son had a major choke episode at 15 months, the

>GI office told us it would be 4 weeks before we could get in there. So I

>called Dr. Hendrickson, and she saw us two days later, ordered all of

>'s testing (endoscopy, gastric emptying, swallow study, ph study, etc)

>and went over all the results with us. Then she referred us to the GI she

>felt was the best, and got us an appointment within a week.

>

>Granted, this isn't typical, but she's just that wonderful.

>

>The second reason why I think you should give her a call is because one of

>her special interest areas is GI problems. She is a long-term reflux

>sufferer herself, and is very compassionate to children who have GI

>problems. Since this is her major area of interest, she can refer you to an

>excellent GI, if this is something you feel you need to do.

>

>Here is her office information:

>Austin Pediatric Surgery Association

>1111 W. 34th Street #307

>Austin, TX 78705

>

>

>

>

>>

>

[Guest guest]

Hi Tina;

I have had doubts and I personally hate the g tube the worst possible way.

I don't know why. But I use it on and is making his life better. So

you cannot say know to something you don't know might d some good. So you

give it yu best try and if its doesn't work yoou know that at least you

gave it your best shot. I know how you feel, but you need to get through it

Beatrix

At 05:54 PM 9/28/1999 EDT, you wrote:

>From: Timmyandtina@...

>

>Well the dreaded phone call came today about 3:00 that the Gi doc thinks it

>is time to move to the G-tube. I have been expecting this to come and now

>that it is being arranged I am scared to death. I think that when we went

to

>the dr last week with all the infections and now with her back being

infected

>from the tape. He said enough was enough. THe Gi said I was hoping that

with

>the formula it would kick start her system but she is getting worse instead

>of better and that is because she is no longer on the prednisone. At this

>point we have no other choice and she will probley be on this for a least

>another year. Talk it over with your husband and I will call back tommorrow

>or Thursday and get things rolling for the first of the week. Has anyone

had

>doublts about this and how do you get over them? Thanks Tina mom to Alyssa

>reflux, asmtha, EE, EG delayed gastic empting, lots and lots of Allergies.

>

>>

>

[Guest guest]

Relax... take a deep breath...

I have a Gtube and all five of my kids have had or do have them. It is a

little painful for a few days but then really NO BIG DEAL. We were BEGGING

for them after 6 weeks of an NG. IT is a much better life, easy to feed,

easy to do everything. You will LOVE IT.

Get a big chocolate bar and a hot cup of tea. Take a long bath. It will be

okay.

STEPH

Re: [eosinophilic gastroenteritis] (no subject)

>From: Timmyandtina@...

>

>Hi on the subject of the tube that is what we thought, we started out the

>tube for only two wks and we were going to the g tube and well here it is a

>month later and we stil have the ngtube. the reason being that Alyssa's

>immune system is so supressed that they dont wont to risk infection.

sounds

>crazy to me but she had been on prednisone for 9 months. The GI keeps

putting

>her on Strange foods foods that she had tested postive for allergies and so

I

>try I have now began to question. He always says that this is a hard case

adn

>all we can do is try. " she will grow out of this I don't have any school

age

>kids with this so maybe that will help. " but the allergist says " I believe

>that if she was going to out grow this she would have already started but

>she seems to be getting more allergies. " some kids can never eat real food

>with this. see two different stories and treatments. the allergist said

she

>needs tpn the gi said the tube.so were do we go? we already drive 31/2

hours

>to see the GI the other would be in Houston. that is over 4 hours. so we

are

>stuck.could you explain to me how to start feeding her. There are so many

>things that she can't have so I am not sure that she will have a balanced

>diet I know that with out the formula she wont. She is allergic to corn,

>beans, peas, any meat, wheat, dyes, peaches,oranges, almost every thing.

can

>you help me it seems that the GI cant and I wont let her get in the shape

she

>was. Thanks, Tina mom to ALyssa 3 1\2

>

>

[Guest guest]

In a message dated 10/9/1999 11:20:34 PM Eastern Daylight Time,

seri_kaya@... writes:

<< penny fr the list use coke to get rid of

rust.... strong huh? >>

No I didn't!!

Hugs

Penny---Ohio

173/158/130

Goal for Oct 31st-----150

http://members.xoom.com/Shadcat708/LC.html " >My Low carb links site

---http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html " >My Home

page--- http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

It's ok, penny, actually I did, she's just got us mixed up! hehe

Cathy

Shadcat708@... wrote:

> From: Shadcat708@...

>

> In a message dated 10/9/1999 11:20:34 PM Eastern Daylight Time,

> seri_kaya@... writes:

>

> << penny fr the list use coke to get rid of

> rust.... strong huh? >>

>

> No I didn't!!

>

> Hugs

> Penny---Ohio

> 173/158/130

> Goal for Oct 31st-----150

> http://members.xoom.com/Shadcat708/LC.html " >My Low carb links site

>---http://members.xoom.com/Shadcat708/LC.html

> http://www.geocities.com/shadcat708/The__Home.html " >My Home

> page--- http://www.geocities.com/shadcat708/The__Home.html

>

> > Big and Beutiful is a state of mind, Never let anyone tell you different.

[Guest guest]

Seri Just post anything to the list the same address

you used. This gets to everybody on the list.

--- dewi dharma dewi seri_kaya@...> wrote:

>

> hiya there sue

>

> hey i'm a newbie here and i must say

> the people are great. i mean i got messages..

> literally pouring to help abt my inability to get

> the

> book in singapore

>

> anyways... i was thinking, how am i

> to

> get the emails of the people on the list so i can

> pass

> on certain things... like how coke can kill... not

> juz

> becos of the sugar content but its acidity..... by

> the

> way... penny fr the list use coke to get rid of

> rust.... strong huh?

>

> anyways.... pls get back to me... i

> wanna be on the mailing list and i want to get

> access

> to the others thru the mailing list

>

> seri

>

------------------------------------------------------------------------

> Big and Beutiful is a state of mind, Never let

> anyone tell you different.

>

>

=====

Sue List Manager 310/260.5/180 255 by 10/31

Wilmington Delaware

Low carb link with info and recipes.http://members.xoom.com/Shadcat708/LC.html

[Guest guest]

Gczgolf@...

Welcome to the list!! I am glad you are giving it a try. I have never

persoanlly heard of people gaining on this way of life, with the exception of

the ups and downs we all go through.

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

List Moderator

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

In a message dated 10/12/99 8:18:26 PM Eastern Daylight Time, Gczgolf@...

writes:

<< Hi, I am just starting the Atkins diet. >>

Hello and welcome to the list!!! Just look at all of our numbers, that should

be proof enough that you CAN lose on this " diet " .

North Carolina

170/138/125

4/9/99

[Guest guest]

Welcome!!! I started Sunday so we are about the same time. I have lost 3 pounds.

My husband has also lost 2 pounds. I am starting to be convinced!!! and can't

wait until I am convinced to the point I wear a size 10!!!

Stay at Home Mother of 5

Wife to the most wonderful man in the world!

199/196/155- 10/10/99

(no subject)

From: Gczgolf@...

Hi, I am just starting the Atkins diet. I have been on it for 2 days now and

am not totally convinced that I will loose weight eatting this way. I no, I

no, other people have testified that the are loosing following this life

changing diet but what if my body is different and I end up gaining weight.

I have over 50 pounds to loose and need the encouragement and advise from

others following the Atkins plan. I don't know how to get into the boards

to

read messages but need your help. Thanks!

---------------------------

[Guest guest]

Helen,

You don't want the darkest, that is bad, it means your getting dehydrated,

anything from trace up to the 2nd to the last is great!! The lighter it is

the more water you drank, your doing good!!

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

!!!!!!!!Go Braves!!!!!!!!!

List Co-Moderator---ICQ#51429926

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

Mid is right on you dont want dark purple it means

you are dehydrated so drink more as Penny put it it

is like koolaid the more water you put in it the

light it is ketosis is a either you are or not. but

you do want to stay away from the dark purple.

--- helen helen@...> wrote:

> I'm curious if ketosis means deep purple or is mid

> way ok? I started last Sunday..very faithful to

> everything..no even eating vegies except for

> cauliflower a couple times and have gained 2

> pounds..any idea?

>

>

>

>

------------------------------------------------------------------------

> Being Big and Beautiful is a state of mind, Never

> let anyone tell you different.

>

>

=====

Sue List Manager 310/260.5/180 255 by 10/31

Wilmington Delaware

Low carb link with info and recipes.http://members.xoom.com/Shadcat708/LC.html

[Guest guest]

Yes, Cyndy! I do. I am a nite owl anyway. So getting my woe adjusted to my hours

has

been a little hectic. I just ate some colby cheese and pork rinds. You are

right,

they don't hit the spot. I don't eat sweet at all, once in a blue moon, but now

I

want something sweet. But I am persevering. Tomorrow, I am going shopping for

some

snack goodies which are on the list. I am on induction so I will be careful. I

don't

have much in the house now but what isn't on the diet.

ORIGCN@... wrote:

> From: ORIGCN@...

>

> Anyone else get a bad

> case of the munchies late at night? Most nites I haven't been hungry but once

> a week I go nuts. Thought about last nite going to a WaWa and getting a

> canister of Redi Whip but figured the cops would stop me thinking I was using

> it to get high like the teenagers. LOL...

> Porkrinds just don't appeal right now.

> Cyndy

--

Mare

mailto:meiwei@...

My Faith site:

http://members.tripod.com/meiwei/faith.html " >Faith

My Bead site

http://members.tripod.com/meiwei/beading.html " >bead

Pixie's Pad

http://members.tripod.com/meiwei/pixie.html " >Pixie

[Guest guest]

Phyllis,

Thanks for the info. Luke is 17 mos. and does not yet have asthma. At

what age do kids typically show signs of it? He only throws up the

clear mucous after eating a food he is intolerant of and after he throws

up he is Mr. Cheerful and normal. Mom, on the other hand, is not!

Kathy

phyllis m. zuckerman-frieze wrote:

>

>

>

> Kathy-

> AJ has bouts of throwing up clear mucous also. It usually happens during an

> asthma attack. I just read in the Food Allergy Network Newsletter that it

> is probably a food reaction that triggers asthma. I had been suspecious

> that a food was involved. I don't know if this information helps you or

> not. AJ was throwing up food, but now it is mucous these days. Phyllis

>

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

[Guest guest]

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