RE: (unknown)

[Guest guest]

Hi Donna,

One problem with learning about this disease is that even a lot of doctors are

not aware of it or how it works. One of our list members has been trying to

gather information into one place to help others find the information. She has

information and several links. One of those is to the web site of another

member. I think that is a good place to start. Her site is

http://home.beseen.com/community/razzle00/eg.htm

I know I typed in a search and found a lot of stuff that I couldn't understand.

Thank Goodness I found this list too.

Sounds like your daughter was just recently diagnosed. Has she been ill for a

while? I am an adult with this disease. There are a few of us and some other

teens, mostly little ones, but I find that I learn from their experiences too.

Does your daughter have Eosinophilic Esophagitis, Gastroenteritis, Colitis?

I think the cells they must be referring to are the eosinophils, which are a

normal part of our white blood cells. It is my understanding that for some

reason in our systems they congregate because of allergic reactions and cause

our suffering. Not very technical and I am sure there are others who can say it

better.

As for what allergies cause it? Well I don't think you will find two people on

this list with the same allergies. There is a huge range and most are still

looking for answers. I still don't know what it is that causes my flare-ups.

Some know exactly.

I have a copy of a medical Textbook article that was very helpful to me. I

called the National Center for Digestive Diseases and they sent it to me. I

recently found out that it has been updated and revised, but don't know what

changes there might be in the information. The book is " Gastrointestinal

Disease, Pathophysiology/Diagnosis/Management Volume I " W.B. Saunders

Company. The article I have which is the older version is Chapter 58

Eosinophilic Gastroenteritis by J. Talley.

I hope this has helped a little. I want to encourage you to visit Joy's site

and 's. Steph has a whole family with feeding tubes. Your daughter

might find some encouragement there. I hope you live in a school District that

provides alternate schooling so your daughter won't fall behind.

There are a great group of people on this list with lots of knowledge about

living with this disease. I am sure you will be as grateful as I to have found

it.

Judy

[Guest guest]

JUDY,

THANK YOU FOR THE WEB SITE INFORMATION, I HAVE THE FREDERBURG NEWS PAPER

ARTICLE THAT RUN TWO WEEKS AGO. IT WAS A STORY THAT SCARE ME A LITTLE.

MICHELLE FIRST HAD SYSPTOMS ON JUNE 10, 1999. WE THOUGHT IT WAS FRESHMAN

NERVES. BUT SINCE AUGUST SHE HAS HAD A MAJOR WEIGHT DROP. WITH VOMITTING.

SINCE AUGUST SHE HAS HAD FOUR ENDOSCOPY ONE COLON AND UPPER GI LOWER GI

SMALL BOWELS X-RAYS YOU KNOW THE ROUTINE. SHE IS AT CHILDREN HOSPITAL IN

PHILA HER DOCTOR IS TREATING SERVERAL SMALL CHILDREN WITH THE ILLNESS SHE

HAS EOSINPHILICESOPHAGITIS. MICHELLE IS ON HOME SCHOOL THE TUTOR COME EVER

DAY FROM THE SCHOOL DISTRICT. THE BIGGES PROBLEM IS SHE IS HUNGRY EVEN WITH

THE TUBE. AND TODAY IS HER BIRTHDAY. AND IT IS REALLY HARD WHEN THE ONLY

THING YOU 15YR OLD WANTS IS TO EAT A BAGEL AND A CHOC COVERED DONUT. I AM

LETTING HER IF THIS WILL HELP HER CONTINUE WITH THE TREATMENT FOR THE NEXT

COUPLE OF MONTHS I DID SEE THAT SOMEONE HERE HAS A TEENAGER SON WITH IT.

MICHELLE WOULD LIKE THEIR SCREEN NAME SO THAT SHE MAY TALK TO ANOTHER

TEENAGER ABOUT THIS. THE SITE YOU SENT THIS MORNING HAS MORE INFORMATION

THAN I BEEN ABLE TO FIND UP UNTIL NOW. I GLAD I DID FIND THIS GROUP. I

HAVE BEEN READ EVERYONE MESSAGES EVERYDAY BUT THIS IS STILL TO NEW TO ME AND

SOME OF THE MESSAGES HAVE REALLY SCARED ME. ECSPICALLY THE LAST THREE DAYS

WHEN THEY HAVE TALKED ABOUT BLEEDING TUBES. WE WERE THINKING ABOUT GETTING

ONE SO THAT KNOW ONE WILL SEE IT (YOU KNOW HOW A 15YR OLD IS ABOUT HER

LOOKS) BUT NOW I DON'T KNOW. IF THEY CAN BLEED LIKE THAT IS IT BETTER OR

SHOULD I JUST HAVE HER LEARN TO ACCEPT HER LOOKS WITH A TUBE. THANK YOU FOR

LISTENING AND SHARING THAT WEB SITE INFORMATION. HAVE A GOOD DAY AND GOD

BLESS DONNA

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Donna,

I would just like to second Steph's remarks.....Spencer's last two hospital

stay's in Step Down ICU were not because of his tube. It was for GI bleed

down in his colon area. But he does bleed around his site a bit. He has

also gotten many ulcers from the tube....but then you have to look at the

size of the child, if they have ever eaten before and if they have had

stomach surgery. All of which are true for Spencer, he has had surgery on

his stomach, never has eaten, very tiny lil boy and also has problems with

healing due the the amount of steroids he is on for his disease. Hope this

helps.

There is another list for parents and children with ng/nj G-tube/G/J-tubes

and J-Tubes. It was very helpful for me in the beginning when Spencer first

got his tube.

Just FYI: I would never have Spencer go back to a ng or nj tube ever, nor

would his doctor allow it. So G-tubes are far better, discreet, and etc.

Re: [eosinophilic gastroenteritis] (unknown)

>

>

> >

> >

> >JUDY,

> >THANK YOU FOR THE WEB SITE INFORMATION, I HAVE THE FREDERBURG NEWS PAPER

> >ARTICLE THAT RUN TWO WEEKS AGO. IT WAS A STORY THAT SCARE ME A LITTLE.

> >MICHELLE FIRST HAD SYSPTOMS ON JUNE 10, 1999. WE THOUGHT IT WAS FRESHMAN

> >NERVES. BUT SINCE AUGUST SHE HAS HAD A MAJOR WEIGHT DROP. WITH

> VOMITTING.

> > SINCE AUGUST SHE HAS HAD FOUR ENDOSCOPY ONE COLON AND UPPER GI LOWER

GI

> >SMALL BOWELS X-RAYS YOU KNOW THE ROUTINE. SHE IS AT CHILDREN HOSPITAL IN

> >PHILA HER DOCTOR IS TREATING SERVERAL SMALL CHILDREN WITH THE ILLNESS SHE

> >HAS EOSINPHILICESOPHAGITIS. MICHELLE IS ON HOME SCHOOL THE TUTOR COME

EVER

> >DAY FROM THE SCHOOL DISTRICT. THE BIGGES PROBLEM IS SHE IS HUNGRY EVEN

> WITH

> >THE TUBE. AND TODAY IS HER BIRTHDAY. AND IT IS REALLY HARD WHEN THE

ONLY

> >THING YOU 15YR OLD WANTS IS TO EAT A BAGEL AND A CHOC COVERED DONUT. I

AM

> >LETTING HER IF THIS WILL HELP HER CONTINUE WITH THE TREATMENT FOR THE

NEXT

> >COUPLE OF MONTHS I DID SEE THAT SOMEONE HERE HAS A TEENAGER SON WITH

IT.

> >MICHELLE WOULD LIKE THEIR SCREEN NAME SO THAT SHE MAY TALK TO ANOTHER

> >TEENAGER ABOUT THIS. THE SITE YOU SENT THIS MORNING HAS MORE INFORMATION

> >THAN I BEEN ABLE TO FIND UP UNTIL NOW. I GLAD I DID FIND THIS GROUP. I

> >HAVE BEEN READ EVERYONE MESSAGES EVERYDAY BUT THIS IS STILL TO NEW TO ME

> AND

> >SOME OF THE MESSAGES HAVE REALLY SCARED ME. ECSPICALLY THE LAST THREE

DAYS

> >WHEN THEY HAVE TALKED ABOUT BLEEDING TUBES. WE WERE THINKING ABOUT

GETTING

> >ONE SO THAT KNOW ONE WILL SEE IT (YOU KNOW HOW A 15YR OLD IS ABOUT HER

> >LOOKS) BUT NOW I DON'T KNOW. IF THEY CAN BLEED LIKE THAT IS IT BETTER

OR

> >SHOULD I JUST HAVE HER LEARN TO ACCEPT HER LOOKS WITH A TUBE. THANK YOU

> FOR

> >LISTENING AND SHARING THAT WEB SITE INFORMATION. HAVE A GOOD DAY AND GOD

> >BLESS DONNA

> >______________________________________________________

> >Get Your Private, Free Email at http://www.hotmail.com

> >

> >

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

[Guest guest]

Donna,

I have four kids (and me) with a tube. Only my really sick one, Kody, who

is also TPN dependent has had bleeds. The rest of us have been jsut fine

with no problems whatsoever. I think the number of kids with bleeds are

really small. In fact, Kody's last bleed was NOT thought due to the tube at

all.

Just to try to put things into perspective for you.

Also, remember my oldest one now eats and seems fine, though we have proven

that he also has the disease. With him, it comes and goes.

Steph.

Re: [eosinophilic gastroenteritis] (unknown)

>

>

>JUDY,

>THANK YOU FOR THE WEB SITE INFORMATION, I HAVE THE FREDERBURG NEWS PAPER

>ARTICLE THAT RUN TWO WEEKS AGO. IT WAS A STORY THAT SCARE ME A LITTLE.

>MICHELLE FIRST HAD SYSPTOMS ON JUNE 10, 1999. WE THOUGHT IT WAS FRESHMAN

>NERVES. BUT SINCE AUGUST SHE HAS HAD A MAJOR WEIGHT DROP. WITH

VOMITTING.

> SINCE AUGUST SHE HAS HAD FOUR ENDOSCOPY ONE COLON AND UPPER GI LOWER GI

>SMALL BOWELS X-RAYS YOU KNOW THE ROUTINE. SHE IS AT CHILDREN HOSPITAL IN

>PHILA HER DOCTOR IS TREATING SERVERAL SMALL CHILDREN WITH THE ILLNESS SHE

>HAS EOSINPHILICESOPHAGITIS. MICHELLE IS ON HOME SCHOOL THE TUTOR COME EVER

>DAY FROM THE SCHOOL DISTRICT. THE BIGGES PROBLEM IS SHE IS HUNGRY EVEN

WITH

>THE TUBE. AND TODAY IS HER BIRTHDAY. AND IT IS REALLY HARD WHEN THE ONLY

>THING YOU 15YR OLD WANTS IS TO EAT A BAGEL AND A CHOC COVERED DONUT. I AM

>LETTING HER IF THIS WILL HELP HER CONTINUE WITH THE TREATMENT FOR THE NEXT

>COUPLE OF MONTHS I DID SEE THAT SOMEONE HERE HAS A TEENAGER SON WITH IT.

>MICHELLE WOULD LIKE THEIR SCREEN NAME SO THAT SHE MAY TALK TO ANOTHER

>TEENAGER ABOUT THIS. THE SITE YOU SENT THIS MORNING HAS MORE INFORMATION

>THAN I BEEN ABLE TO FIND UP UNTIL NOW. I GLAD I DID FIND THIS GROUP. I

>HAVE BEEN READ EVERYONE MESSAGES EVERYDAY BUT THIS IS STILL TO NEW TO ME

AND

>SOME OF THE MESSAGES HAVE REALLY SCARED ME. ECSPICALLY THE LAST THREE DAYS

>WHEN THEY HAVE TALKED ABOUT BLEEDING TUBES. WE WERE THINKING ABOUT GETTING

>ONE SO THAT KNOW ONE WILL SEE IT (YOU KNOW HOW A 15YR OLD IS ABOUT HER

>LOOKS) BUT NOW I DON'T KNOW. IF THEY CAN BLEED LIKE THAT IS IT BETTER OR

>SHOULD I JUST HAVE HER LEARN TO ACCEPT HER LOOKS WITH A TUBE. THANK YOU

FOR

>LISTENING AND SHARING THAT WEB SITE INFORMATION. HAVE A GOOD DAY AND GOD

>BLESS DONNA

>______________________________________________________

>Get Your Private, Free Email at http://www.hotmail.com

>

>

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

[Guest guest]

Donna,

My son is 12, he has EE. He was dx'ed with it over the summer. He

doesn't need a food tube, but my friends 3yr. old has one. She had the nose

tube first, and I can tell you, the nose tube is a bif headache. The tape

irratates the face, as your daughter knows, it also attracts stares, and is a

pain and very messy. The g tube is much better. They don't all bleed. Her's

never has and she has had it for over a year. Has you daughter had any

testing for food allergies? when was she diagnosed with EE?

Cathy

mom to 12, AS, EE, allergic to soy, nuts, peanuts, tomato, rice,

carrot, string bean, kidney bean, orange, pear, onion, mustard seed, grape

[Guest guest]

Donna,

I am glad that I was able to help a little. Yes, sometimes there are scary

things we read about here, but I think that even that information is helpful. I

get very sad hearing about all the babies and little ones that are suffering

here. I know what pain I have to endure at times and their disease process

seems much more acute than mine. I think that it all has to do with the

variations of this disease. Since it can affect the entire digestive system and

then three different layers in the intestines, there will be a variety of

symptoms and treatments and complications. Some cases much more severe than

others, but we are all in the same boat with a disease that is rare and not well

understood. We will get there together........

What is your daughters name? Please wish her a happy birthday for me!!!!

Judy

[Guest guest]

Hi Donna,

Thanks so much for taking the time to post the web site and the name of the

book where we can get some kind of info. on this horrible disease. My 10

yr. old daughter has EE. Her stomach is full of polyps and she is very

growth delayed. We are just beginning to look into this problem and have

not had much luck getting info on it. Thanks Again!!!! If you know of more,

or do in the future, please let me and everyone else know.

Barb

--On Wednesday, February 16, 2000, 11:44 PM -0800 judy

jabcogg@...> wrote:

>

>

>

> Hi Donna,

> One problem with learning about this disease is that even a lot of

> doctors are not aware of it or how it works. One of our list members has

> been trying to gather information into one place to help others find the

> information. She has information and several links. One of those is to

> the web site of another member. I think that is a good place to start.

> Her site is http://home.beseen.com/community/razzle00/eg.htm I know I

> typed in a search and found a lot of stuff that I couldn't understand.

> Thank Goodness I found this list too. Sounds like your daughter was just

> recently diagnosed. Has she been ill for a while? I am an adult with

> this disease. There are a few of us and some other teens, mostly little

> ones, but I find that I learn from their experiences too.

>

> Does your daughter have Eosinophilic Esophagitis, Gastroenteritis,

> Colitis?

>

> I think the cells they must be referring to are the eosinophils, which

> are a normal part of our white blood cells. It is my understanding that

> for some reason in our systems they congregate because of allergic

> reactions and cause our suffering. Not very technical and I am sure

> there are others who can say it better. As for what allergies cause it?

> Well I don't think you will find two people on this list with the same

> allergies. There is a huge range and most are still looking for answers.

> I still don't know what it is that causes my flare-ups. Some know

> exactly.

>

> I have a copy of a medical Textbook article that was very helpful to me.

> I called the National Center for Digestive Diseases and they sent it to

> me. I recently found out that it has been updated and revised, but don't

> know what changes there might be in the information. The book is

> " Gastrointestinal Disease, Pathophysiology/Diagnosis/Management Volume I

> " W.B. Saunders Company. The article I have which is the older version

> is Chapter 58 Eosinophilic Gastroenteritis by J. Talley.

>

> I hope this has helped a little. I want to encourage you to visit Joy's

> site and 's. Steph has a whole family with feeding tubes. Your

> daughter might find some encouragement there. I hope you live in a

> school District that provides alternate schooling so your daughter won't

> fall behind.

>

> There are a great group of people on this list with lots of knowledge

> about living with this disease. I am sure you will be as grateful as I

> to have found it. Judy

> __________________________________________________

>

> Please click above to support our sponsor

>

> __________________________________________________

[Guest guest]

CATHY,

YES MICHELLE HAS BEEN TESTED FOR ALLERGIES THE BLOOD WORK COMES BACK WITH

MANY ALLERGIES BUT THE SKIN PICS SAID THAT SHE HAS NONE. IN OCOTOBER THEY

THOUGHT THAT SHE HAD CELTIAC (ALLERGY TO GLUTEN FIND IN WHEAT RYE BARLEY AND

OATS) BUT BECAUSE THE SMALL INTENTINSE BIOSPY SHOW THAT THE VENLIE(NOT

SHOULD OF SPELLING) WERE INTAC THAT SHE WAS NOT A TRUE CELTIAC . SHE HAS

ALWAYS HAD SEASONAL ALLERGIES AND CATS. BUT NOTHING ELSE UNTIL NOW. HER

DOCTOR ALLOWED HER TO PICK ONE FRUIT TO START WITH THIS WEEK AND SHE IS

HAVING AN APPLE A DAY (I HOPE THE OLD WIVES TALE IS TRUE " AN APPLE A DAY

KEEPS THE DOCTORS AWAY " . HER GI DOCTOR AT CHILDREN'S IS LINE UP AN

ALLERGIST SINCE THE ONE WE HAD BEFORE DOES NOT BELIEVE THAT SHE HAS ANY FOOD

ALLERGIES. GOD BLESS DONNA (MOTHER TO MICHELLE WHO IS 15 YRS OLD EE) PS

BECAUSE OF HER AGE I HAVE GIVEN HER PERMISSION TO SET AND VISIT THIS SITE

SHE THAT SHE UNDERSTANDS WHAT SHE IS DEALING WITH SINCE IN THREE YEARS SHE

WILL BE OFF TO COLLEGE AND ON HER OWN

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Where in New Jersey are you? All I can say is that it must be like being on

a a diet. If you ever have dieted, you always want what you can't have.

Things that you didn't usually eat, even seemed appealing. But in this

case, you can't eat at all. Sorry, but I don't have any suggestions.

Phyllis--mom to

AJ (12/22/95) EG, GERD, Asthma, Allergies, speech delay and bilateral

sensori neural hearing loss

Remi (8/3/92) Spina Bifida, LATEX, avacodo, broccoli, chocolate, eggs,

mushrooms, peanuts, shellfish, & tree nut allergies

[Guest guest]

Donna,

Please have write me. I totally understand how she feels. I'm now

a freshman in college and since I have to do my grocery shopping now I can

cheat so easily. The problem is everyone can see how puffy I look or can

see rashes to know I ate something bad. And I feel awful and have to be on

benadryl for days. A few times I didn't read labels well enough when I

thought I was doing so good and the last time I had to go to the doc and

they told me the next time I would probably go into shock. I adore cooking

and crave my allergens all the time. I make friends go with me to the store

(actually, they drive me since my narcolepsy has gotten so bad I don't want

to drive anymore). Please don't be angry with to her face.

Whenever my mom would get mad at me I would just get more upset which would

add stress and I would be more likely to eat something I shouldnt. It is so

hard being in high school and not being able to eat like everyone else.

Teenage lives revolve around food more than anything. Tell that

for my senior prom we went to this incredible restruant and I had a neocate

juice box. Everyone was so nice to me but didn't make me feel like a freak.

I had to go to school my senior year with an NG tube for several days and

everyone thought I was dying. I threw it up once and the ER nurse didn't

put in an infant sized one (I have tiny nasal spaces) and it hurt so bad I'd

cry whenever I tried to talk. I have missed 45-75 days of school each year

for the past 6 and last semester missed 1/4-1/3 of each class. I am sure

she is scared to death of so many things right now. She wants to be

independent, but is forced to rely very heavily on her family and doctors

just to stay alive. She may worry about missing too much school and missing

out on life. It's hard to have to repeatedly turn down parties movies and

get-togethers because so much food will be there. If she's worried about

losing friends, if they ditch her now then they weren't good enough friends

to keep around. She could be worried about boys. If you stay cheerful and

just continue to be a nice person, guys will like you no matter what you

think is " wrong " with you. I found a guy right off here that adores me.

We've been together 6 months already and nothing about my health affects him

in any way. If I throw up at his house he just rubs my stomach and gets me

a cold washcloth. If I have an allergic reaction he;ll watch me for hours

to make sure I am okay. I never thought I would find anyone as wonderful as

he is to me, but here he is. If she's worried about waking up tomorrow, it

took me till about last month to realize it's okay to plan more than a

couple years down the road because I WILL be here. High school is hard

enough for those who are perfectly healthy, so I say kudos to her for going

back and for doing so good that she only cheated on little things. Does she

have an acceptable outlet for anger or frustration? I would walk my dog for

hours when I was upset. (Next year I'm getting an apartment so I can bring

him to school with me- I miss him too much!) Getting out and doing

something also helps keep you busy so you don't feel as hungry- if you avoid

spots with food. Sorry I couldn't think of many suggestions! Please just

let her know she's not alone!

Kelsey

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hi Donna - I'm Beth - a 30-year-old with EG (and I live in NJ too)...

I can imagine you must be frustrated with your daughter because you want her to

get better and not hurt anymore....but only she can make the decision that she's

going to do what needs to be done to get to that point. Getting mad at her won't

help and she's probably feeling aqful enough as it is...

This problem can effect people mentally as much as phsycially (at least that's

what I've found) - it is unexplainably difficult to watch everyone around you

eat whatever they want, go out to dinner, get popcorn at the movies, etc...I can

understand why your daughter would get frustrated and cheat...especially at 15

when all you want to do is be with your friends and do whatever they are

doing...

If I'm out of line with saying you shouldn't get mad at your daughter I

apologize, but what she's going through is physcially and mentally agonizing...

I hope she's feeling better now -

Beth

[Guest guest]

Dawn -

i know it must be difficult to make a 4-year-old understand all that...my

response was actually responding specificaly to Donna - who has a 15-year-old

daughter...

beth

[Guest guest]

Donna,

Have Email me privately.

I have lots of suggestions for her.

Steph.

[eosinophilic gastroenteritis] (unknown)

>

>

>HELLO EVERYONE,

>

>I HOPE AJ IS DOING BETTER TODAY.

>

>MY DAUGHTER MICHELLE WHO IS 15YRS OLD WAS DIGNOSED WITH EE AND HAS

>BEEN ON A NG TUBE SINCE CHRISTMAS DAY. SHE JUST STARTED BACK TO

>SCHOOL ON TUESDAY (HER FRESHMAN YEAR). AND NOW I FIND OUT THAT SHE

>HAS BEEN CHEATING AND EATING FOODS (A COOKIE AND STICK OF GUM LITTLE

>THINGS) SHE WAS SICK AGAIN ON FRIDAY AND I TRIED TO EXPLAIN THAT IT

>WAS BECAUSE SHE CHEATED. I KNOW HOW HARD IT MUST BE TO NOT BE ABLE

>TO EAT ANYTHING SHE JUST STARTED ON APPLES A MONTH AGO AND ON THE 27

>OF FEB. STARTED WHITE POTATOES NOW WE HAVE TO STOP THE POTATOES AND

>SEE IF SHE IS SICK BECAUSE SHE CHEATED OR WAS IT THE POTATOES. I'M

>SO MAD AT HER RIGHT NOW. I DON'T KNOW HOW TO STOP HER FROM CHEATING

>WHEN SHE IS IN SCHOOL AT HOME HERE I HIDE ALL FOODS THAT SHE LIKES TO

>EAT . IT'S JUST SO HARD WHEN THEY ARE OLDER AND YOU CAN'T CONTROL

>THEIR LIVES AS EASY AS WHEN THE A LITTLE. I DON'T GIVE HER ANY MONEY

>AT ALL BUT SHE HAS HER OWN MONEY FROM HER BABYSITTING JOBS SO SHE CAN

>BUY FOODS WITHOUT ME.I'M JUST SO TIRER OF TALKING TO HER ABOUT

>FOLLOWING THE RULES SO THAT WE CAN FINE FOODS THAT SHE CAN EAT. SHE

>TELLS ME THAT EVEN WITH THE VIVONEX TEN THAT SHE IS ALWAYS HUNGRY THE

>NURT. SAYS THAT WE CAN'T INCREASED HER FOOD BECAUSE WE WILL BE OVER

>FEEDING HER. I JUST WISH I KNOW WHAT TO SAY TO HER THAT WOULD MAKE

>HER UNDERSTAND AND NOT TO WORRY ABOUT WHAT HER FRIENDS SAY OR DO,,OR

>EAT. IF ANYBODY HAS A SUGGESTION PLEASE PASS IT ALONG THANKS. AND

>PLEASE KEEP ALL THE SNOW IN MAINE I HAVE REALLY ENJOYED THE 60-70

>DEGREE DAYS WE ARE HAVING HER IN NEW JERSEY

>

>DONNA MOTHER OF MICHELLE 15 EE, KATIE 13 ALLERGY TO ALL ANITIBODICS,

>SARA 10 ADHD, MICHEAL 4

>

>

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

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>0.0% Intro or 9.9% Fixed APR and no hidden fees.

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>

>

__________________________________________________

[Guest guest]

Beth, It is very hard to make a 4 year old understand why they are hurting

and that food (the things that are considered a " necessity " by society) is

acting making him/her miserable. It is so fustrating that BJ still wants to

eat so I know what Phyllis is dealing with. BJ and AJ are very close in

age.

Dawn

Mom to

Dakota

BJ-EG, Asthma, Reflux

Mackenzie

Re: [eosinophilic gastroenteritis] (unknown)

> From: Rosie0613@...

>

> Hi Donna - I'm Beth - a 30-year-old with EG (and I live in NJ too)...

>

> I can imagine you must be frustrated with your daughter because you want

her to get better and not hurt anymore....but only she can make the decision

that she's going to do what needs to be done to get to that point. Getting

mad at her won't help and she's probably feeling aqful enough as it is...

>

> This problem can effect people mentally as much as phsycially (at least

that's what I've found) - it is unexplainably difficult to watch everyone

around you eat whatever they want, go out to dinner, get popcorn at the

movies, etc...I can understand why your daughter would get frustrated and

cheat...especially at 15 when all you want to do is be with your friends and

do whatever they are doing...

>

> If I'm out of line with saying you shouldn't get mad at your daughter I

apologize, but what she's going through is physcially and mentally

agonizing...

>

> I hope she's feeling better now -

>

> Beth

>

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

> DON'T HATE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click.egroups.com/1/2120/4/_/474479/_/952877067/

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

>

>

>

[Guest guest]

Ok, I wish I wish I could make BJ understand how " bad " food is. It would

make life a lot simplier if he would stop begging for food.

Dawn

Re: [eosinophilic gastroenteritis] (unknown)

> From: Rosie0613@...

>

> Dawn -

>

> i know it must be difficult to make a 4-year-old understand all that...my

response was actually responding specificaly to Donna - who has a

15-year-old daughter...

>

> beth

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> http://click.egroups.com/1/975/4/_/474479/_/952878524/

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

>

>

>

[Guest guest]

Now Dawn, wasn't it just a short time ago that you were complaining that you couldn't get him to eat...LOL...

Has being back on the Neocate made him hungry again?

I think it is time we had our own test kitchens to come up with safe snacks for the kids who are on these formulas. They need to chew to develop their jaws don't they.

I know Steph has found some safe snacks for her kids. Hope you can find some for BJ

Well that's my dream of the day....Snack foods that are safe and maybe even nutritious.

Judy

[Guest guest]

We went out to a function today and there was a help yourself table of food.

We brought along a friends daughter. She heard AJ whining and went over to

her and said-AJ all the food has dairy. YOu don't want any of it. It was

so cute. One 4 year old to another. At home she has been cooperative about

not eating. I just came back from the market with Gatorade in juice boxes

and jello for us to make and some ice pops. School will be interesting

tomorrow. I teach in another room, so she always has access to me. Then we

have Brownies after school. We won't make it home until 5:30. Wish me

luck. It is going to take a few days for her to feel better so right now,

it is kind of a battle, but she is definetly not as whiny. Gotta go check

out which teams are in and which are out. I am a big college hoops fan.

Phyllis

[Guest guest]

Hi Lynn,

I'm Beth - an adult with EG...

When I waa first diagnosed with this disease, my first GI told me that after

a 3-month course of steroids the disease would effectively go into remission

and I would be " cured " - obviously this didn't happen and it was devestating

to me physically and emotionally, so instead of going back on prednisone

right away i tried " natural remedies " -

First I tried acupuncture along with natural herbs - i was taking 20 of these

all natural pills a day plus getting acupuncture twice a week from a highly

recommended Chinese herbalist and acupuncturist - i did this for two months

with no improvement at all...it got to a point were these pills with all

natural ingredients were making me very sick...so i stopped that...

Then i went to a vitamin store and got more natural pills that allegedly

helped with digestive problems - tried that for about a month, with no

results...

Then i tried a host of more traditional meds - nothing worked...finally - I'm

back on prednisone...and dealing with the side effects as best i can...

I know that everyone who has EG/EE has different symptoms and people react

differently to different medicines and treatments, but i just wanted to share

what did and didn't work for me...Again - it could be different with child

and an adult - I didn't develop EG until I was about 25 and that was five

years ago.

I'm sorry i couldn't be more optimistic for you...I know how devestating this

can all feel. It took me a long time to get to the point where I accepted the

fact that I would most likely never be " cured " = although I can be treated..

Best of luck -

beth

[Guest guest]

Lynn,

I am sorry that the messages latey have been so serious. That happens sometimes. I can't really help you with a lot of the issues you are dealing with because my EG had an Adult onset. I do believe that feels she has had it all her life. To some her life may not be normal, but normal is relative... From what I have seen and heard of her family they are happy and have fun together. They are mostly healthy as far as I can tell. I know of two others who contracted EG about age 10 that are now in their 20's. College and marriage are some of what they are doing now. That's pretty normal.

Yes it is a serious disease, but I don't think it has to be disabling in most cases. There are kids here who play baseball and run just like their peers. They just can't eat. Yes that makes them different,

I know how terrifying it is to have a sick child and feel helpless. Mine didn't have Eg, but an equally serious illness. I never gave up hope. That is what we have to cling to no matter what.

And there is reason to have hope. There are new drugs in testing right now that may make a difference. Maybe they won't we don't know, but there is next year and the year after. There have been so many advances in medicine in so many areas over the years. This is a confusing disease for me in that we all have the same disease and yet all have it a little differently. Different treatments work for different people. There is hope...

We have heard that some kids do outgrow it. That is always a hope. We are here together as a group of parents and Adults with a disease that is confusing. Together we can explore options that alone we would never hear about. Together we can vent and cry and rejoice. Together we can follow that ray of light at the end of the tunnel. I think sometimes we need to see the worst to be able to look for the best.

I am sure that others will have some answers for you. I just want to send you a big hug. I get scared too, but then I get over it and go on. Well most of the time....LOL. It is okay and normal and definitely natural when you are a parent who loves their child.

I just know the answers will come one day for all of us and until then we have to do the best we can and never give up hope....

Lots of hugs.

Judy

[Guest guest]

Hi,

I was wondering if any of the adults on this list either are currently in

college or went through college with their stomach problems. I am sick of

people telling me to find other careers besides one in science and

everything I come up with you need near-perfect attendance. WHat types of

jobs do you all have? My counselors tell me to try and find something I can

do at home. (They say this because I have been very sick for 7 years

without many answers and they figure I'm not going to be magically cured

anytime soon). I really want to be a vet and an animal music therapist. I

guess I am just looking for proof that you can be chronically ill and still

have the job you want/like, and that you can get through college just like

anyone else.

Thanks,

Kelsey

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hi Kelsey -

My EG started when I was in graduate school getting my MA in journalism - so

i know it's tough to concentrate on classes and all that with being sick...I

was working two jobs and going to school full time when i started getting

sick - i can't tell you how many times i had to run out of class and get sick

- i had very understanding profs, so i was lucky. i explained what the

problem was, even though i hadn't been officially diagnosed with EG yet, and

if I had to miss class b/c i was sick, they'd make time to meet with me...

i know how hard it is to concentrate on studying and all that when you're

feeling awful, but it would really be awful to give up on your dreams just

becasue other people are telling you that you can't do it...

I am a newspaper reporter, which means I don't have a regular 9-5, M-F work

schedule, which is good - if I'm sick and need to come in later, I can work

around it...Also - my editors know about my EG and are willing to help me

work around it...I've found that I really haven't had to miss too much work

because of it...

For me - being upfront about my illness has always helped. People will

generally be understanding and willing to work around it if you let

them...and i'm proof that you can do what you want to do professionally, even

with EG -

Good luck to you -

Beth - adult with EG for the past five years.

[Guest guest]

Thanks, Judy. Your note is a comfort.

Lynn

" judy " jabcogg@...> on 03/16/2000 02:43:00 AM

Please respond to eosinophilic gastroenteritis (AT) onelist (DOT) com

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

cc:

Subject: Re: [eosinophilic gastroenteritis] (unknown)

Lynn,

I am sorry that the messages latey have been so serious.  That happens

sometimes.  I can't really help you with a lot of the issues you are

dealing with because my EG had an Adult onset.  I do believe that

feels she has had it all her life.  To some her life may not be

normal, but normal is relative... From what I have seen and heard of her

family they are happy and have fun together.  They are mostly healthy as

far as I can tell. I know of two others who contracted EG about age 10

that are now in their 20's.  College and marriage are some of what they

are doing now.  That's pretty normal.

Yes it is a serious disease, but I don't think it has to be disabling in

most cases.  There are kids here who play baseball and run just like their

peers.  They just can't eat.  Yes that makes them different,

I know how terrifying it is to have a sick child and feel helpless.  Mine

didn't have Eg, but an equally serious illness.  I never gave up hope.

That is what we have to cling to no matter what.

And there is reason to have hope.  There are new drugs in testing right

now that may make a difference.  Maybe they won't we don't know, but there

is next year and the year after.  There have been so many advances in

medicine in so many areas over the years.  This is a confusing disease for

me in that we all have the same disease and yet all have it a little

differently.  Different treatments work for different people.  There is

hope...

We have heard that some kids do outgrow it.  That is always a hope.  We

are here together as a group of parents and Adults with a disease that is

confusing.  Together we can explore options that alone we would never hear

about.  Together we can vent and cry and rejoice.  Together we can follow

that ray of light at the end of the tunnel.  I think sometimes we need to

see the worst to be able to look for the best.

I am sure that others will have some answers for you.  I just want to send

you a big hug.   I get scared too, but then I get over it and go on.  Well

most of the time....LOL.  It is okay and normal and definitely natural

when you are a parent who loves their child.

I just know the answers will come one day for all of us and until then we

have to do the best we can and never give up hope....

Lots of hugs.

Judy

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[iMAGE]

[Guest guest]

Rosie,

Thanks for replying. I guess what I'm hearing is that it won't hurt to

try, but there might not be any improvement. I guess I'll talk to Shane's

doctors about trying the Aloe Concentrate.

Lynn

Rosie0613@... on 03/16/2000 02:45:45 AM

Please respond to eosinophilic gastroenteritis (AT) onelist (DOT) com

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

cc:

Subject: Re: [eosinophilic gastroenteritis] (unknown)

From: Rosie0613@...

Hi Lynn,

I'm Beth - an adult with EG...

When I waa first diagnosed with this disease, my first GI told me that

after

a 3-month course of steroids the disease would effectively go into

remission

and I would be " cured " - obviously this didn't happen and it was

devestating

to me physically and emotionally, so instead of going back on prednisone

right away i tried " natural remedies " -

First I tried acupuncture along with natural herbs - i was taking 20 of

these

all natural pills a day plus getting acupuncture twice a week from a highly

recommended Chinese herbalist and acupuncturist - i did this for two months

with no improvement at all...it got to a point were these pills with all

natural ingredients were making me very sick...so i stopped that...

Then i went to a vitamin store and got more natural pills that allegedly

helped with digestive problems - tried that for about a month, with no

results...

Then i tried a host of more traditional meds - nothing worked...finally -

I'm

back on prednisone...and dealing with the side effects as best i can...

I know that everyone who has EG/EE has different symptoms and people react

differently to different medicines and treatments, but i just wanted to

share

what did and didn't work for me...Again - it could be different with child

and an adult - I didn't develop EG until I was about 25 and that was five

years ago.

I'm sorry i couldn't be more optimistic for you...I know how devestating

this

can all feel. It took me a long time to get to the point where I accepted

the

fact that I would most likely never be " cured " = although I can be

treated..

Best of luck -

beth

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[Guest guest]

Lynn,

I certainly wouldn't try anything like that without first checking with his doctors. I am even shy about taking vitamins because I am not sure how I will react to them. I think you do want to be informed about what alternatives are available and then with the doctors make educated choices.

So many of these things like the Aloe you are talking about are just high priced elixirs like the traveling Medicine shows used to sell. They make promises with no real facts to back them up. I don't know that this is anything like that, but I urge caution.

Judy

Re: [eosinophilic gastroenteritis] (unknown)

From: hudlowl@... Rosie,Thanks for replying. I guess what I'm hearing is that it won't hurt totry, but there might not be any improvement. I guess I'll talk to Shane'sdoctors about trying the Aloe Concentrate.Lynn

[Guest guest]

Lynn,

I just wanted to offer my support and agree with you that it is very hard on

parents and children. Although it seems hard to look at our kids as normal,

I really think they are. I guess food isn't everything and their

personalities shine through all of the other stuff. Spencer has a Central

IV line a G-tube and a J-tube but I still let him do most things that he can

do without dangling himself. I can't recall a time when someone has looked

at him as not normal. In fact yesterday we were shopping at a bunch of

different places and went to dinner and I didn't get one comment except

things like " Boy you son has a lot of energy and spark " (That was at dinner)

He only had a cup of water and a spoon. He also had an IV in plain view for

everyone to see. Although I probably would have thought that I would get a

lot of comments, I did not get one regarding what was wrong with him.

Even with three tubes in this kid he's as normal as they come........Hope

this helps.

[eosinophilic gastroenteritis] (unknown)

> From: hudlowl@...

>

> Hi. The information that I've been getting over the past few days from

the

> support group is really hitting hard and making me feel very depressed and

> hopeless about this illness. I can really relate to Dawn note about

> being sick and tired. I know it's a good thing to find people out there

> who are dealing with this, but yet what I'm hearing is making me realize

> now more than ever how sick Shane is. I knew before that this illness is

> very serious, but I guess I've just kept hoping for the best and I've

tried

> to stay optimistic for Shane's sake. But it doesn't sound like there's a

> lot of hope for leading a normal life with this problem. The doctors at

> Hopkins Hospital told me that some kids outgrow this illness after 5

> or 6 years of being sick, and can suddenly eat just about anything they

> want. I know the Washington Post article on the Harlow family said the

> oldest boy did outgrow it. , or anybody, do you know the

> statistics for outgrowing the symptoms? Are there any statistics

> available?

>

> Also, or anyone else, how did you make the decision to not eat

> and just be fed tubularly? How do I know when it's getting to be too long

> trying the steroids? I know Shane can't be on them forever, but I'm

> starting to feel like I better be making this decision sooner rather than

> later, or he could end up with a whole bunch of other serious problems

from

> the steroids. When I read the Washington Post article, so much of what

the

> Harlows have gone through up to the point of switching to the tubular

> feeding sounds just like what my son has been going through for the past

> two years. I haven't shown Shane the Washington Post article and

discussed

> it with him yet. I think I have to, but I don't know when the timing will

> be right. I think it will really discourage him. He's already struggling

> emotionally because of this illness. But he's 12 years old and I think

> he's old enough to have some say in what we do from here. And if he is

> only being fed tubularly, how will we know if he outgrows the symptoms?

> Shane and I have to go back to Hopkins Hospital on March 30, and I

> want to go with as much information as I can to discuss this with the

> doctors. So I appreciate any advice anyone can give me.

>

> I recently met a man who is into health products. He told me about a

> product that the Oasis Wellness Network distributes called Active Aloe

> Concentrate that he claims is all natural and might help Shane with his

> digestive problems. Below is the url to the site he referred me to with

> information on the product:

>

> http://www.oasiswellness.com/_products/activealoeW.html

>

> Has anybody heard of this before? Tried it? Has an opinion as to whether

> it is something that should be tried or not? By the way, if you look on

> this website, the description says one of the ingredients is natural

> flavors. I checked with Bob Highland, the man who told me about this, and

> he says there are no food allergins in the natural flavors.

>

> When Shane was first diagnosed a year and a half ago, I took him to a

> recommended holistic doctor to see what the holistic approach might be for

> dealing with this illness. After talking to several doctors, I decided

not

> to try this approach yet. I was told that I must be very careful with

> mixing prescription medications with natural herbs because the results are

> unpredictable. So, I have not tried this approach yet. Does anyone out

> there have any experience with using herbs or holistic medicine for this

> problem?

>

> Lynn

> Global Methods & Tools

> IBM Global Services

> 800 North Frederick Avenue

> Gaithersburg, MD 20879

> T/L 372-3307

> Fax T/L 372-8963

>

>

>

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