Re: support

[Guest guest]

,

There is no shame in what you had and no reason to be embarrassed. That is one

of the complications of this disease. The last time I was hospitalized part of

the problem was an Illeus, that is a narrowing of a section of the intestine.

If they had not caught it it could have caused a blockage. I waited anxiously

for it to resolve itself in order to avoid surgery. I think the intestines must

spasm and that is what causes these things to happen. Also when there is

swelling from the eos they can close off enough to cause a blockage. So please

don't be embarrassed.

As for Families, My mother suffers from GERD and recently had a gastro bleed

that could not find. My Dad has unspecified Gastro Pain, and my Brother had

problems. One of my sisters also has problems. and then of course my kids.

Re: [eosinophilic gastroenteritis] support

I have also dealt with GI problems throughout my life. I had reflux as a

infant, and it reached its peak when I was about 14. It was then that I was

hospitalized for 6 days due to a bad episode.

Of course, hindsight is always 20/20... the GI wonders if I had a motility

disorder as a child. I'm frankly embarrassed to say this - but my 6 day hospital

stay was for a huge intestinal obstruction/impaction. I kept telling my mother I

was sick for about 2 weeks, and then one day I started having pain so bad I

couldn't stand up at work (yes, I started working at 14 :-) and then started to

vomit neon green fluid. It was a pretty painful experience.

And GI problems run in my family. My grandfather has reflux/hiatal hernias,

my mother has reflux and needs a fundo, I had reflux, and then .

[Guest guest]

,

Your symptoms sound a lot like what put me in the hospital the last time. I got

to a point that even water hurt. I was dehydrated and in shock by the time I

finally went in. Don't wait too long.

I now take along with everything else 800mg of tagament twice a day. It does

seem to help. The doctors also prescribed Vicodin to take when the pain gets

too bad. I think it has saved me more than a few times.

I am wondering if anyone else gets high Eosinophil counts when they are having

problems. Mine don't always go up but were 3500 on one hospital stay. The

reports say that not everyone with the disease has peripheral eos which only

makes diagnosis harder.

Judy

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

It sounded really scary to me.

Judy

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really don't

understand all the technical things you mention but I do know how hard it is to

be a Mother taking care of an ill child. My heart goes out to you. I hope all

will be well. By the way, good luck with your move. My husband was in the

Marine Corps so I know a little about that too.

Judy

[Guest guest]

In a message dated 10/1/99 7:45:40 AM Pacific Daylight Time,

andrea.allred@... writes:

<<

Thank you for sharing your story.........yes, 30 years ago my little one

would be gone by now. My how technology changes. Boy am I thankful for TPN

and all this new stuff. Even back 10 years ago Spencer would be sitting in a

hospital and not at home b/c of the IV in his heart or for that matter even

the G/J tube he has.

I >>

I am one of the first people, the first girl I think my mom said, that had

and survived the J tube. I am 35 .

Cathy

[Guest guest]

Sharon

I have twin too. Ted and they were born at 34 weeks. Ted weighed

3'1/2 " and weighed 4'21/2 " They are 18 now and have made up for the

low birth weights. I spent the last 8 weeks in bed. I actually lost weight

with them but don't remember if I had gastro problems.

Sounds like there are a lot more adults out there than you thought. I

wonder if this disease is really as rare as they say or if people are not

being diagnosed.

Judy

Re: [eosinophilic gastroenteritis] support

> From: SDidinsky@...

>

> In a message dated 10/1/99 2:00:02 PM Eastern Daylight Time,

> supplyguy@... writes:

>

> <<

> You know this is sure seeming like something is up.

> I was just in the doctor yesterday who keeps worrying about me because no

> matter how much I drink I can't stay hydrated. I am still gaining weight

> but have been going into the hospital 2-3 times a week for IV fluids. I

> drink constantly but if you went to the bathroom as much as I do it would

be

> really hard to stay hydrated too. >>

>

> I was hospitalized for 8 weeks with the twins and on IV fluids. I could

not

> keep anything down - even water. I gained about 12 pounds the first 20

weeks

> and then from 24-34 weeks I was so sick by the time I delivered I had

gained

> only 2 pounds - this is with twins - luckily at 34.5 weeks Clayton weighed

> 4.14 and Cole 5.5.

>

> Love,

> Sharon

>

> >

[Guest guest]

Judy,

You are probably right. I am drinking Power aide.........about one bottle in 4

days now. I take a lot of pain med's.....valium, and darvocet to name a few oh

and the lovely prilocec.

Spencer has Peripheral Eos's..........hmmmm. I have never been tested. Guess I

should. I might just end up in the hospital.

Thank you for your thoughts....it really helps. I am really glad that there are

a few adults on here with the disease and with their kids with the disease as

well.

Love,

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really

don't understand all the technical things you mention but I do know how hard it

is to be a Mother taking care of an ill child. My heart goes out to you. I

hope all will be well. By the way, good luck with your move. My husband was in

the Marine Corps so I know a little about that too.

Judy

[Guest guest]

Judy,

It was.....but we kept our cool. It has happened about 7 times. I can't stand

it. I have to stick the tube back into a hole in his stomach......ohhheeewww.

It hurts him and it bleeds.

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really

don't understand all the technical things you mention but I do know how hard it

is to be a Mother taking care of an ill child. My heart goes out to you. I

hope all will be well. By the way, good luck with your move. My husband was in

the Marine Corps so I know a little about that too.

Judy

[Guest guest]

It seems to look that way......

Re: [eosinophilic gastroenteritis] support

>

>

> > From: SDidinsky@...

> >

> > In a message dated 10/1/99 2:00:02 PM Eastern Daylight Time,

> > supplyguy@... writes:

> >

> > <<

> > You know this is sure seeming like something is up.

> > I was just in the doctor yesterday who keeps worrying about me because

no

> > matter how much I drink I can't stay hydrated. I am still gaining

weight

> > but have been going into the hospital 2-3 times a week for IV fluids.

I

> > drink constantly but if you went to the bathroom as much as I do it

would

> be

> > really hard to stay hydrated too. >>

> >

> > I was hospitalized for 8 weeks with the twins and on IV fluids. I could

> not

> > keep anything down - even water. I gained about 12 pounds the first 20

> weeks

> > and then from 24-34 weeks I was so sick by the time I delivered I had

> gained

> > only 2 pounds - this is with twins - luckily at 34.5 weeks Clayton

weighed

> > 4.14 and Cole 5.5.

> >

> > Love,

> > Sharon

> >

> > >

>

> >

[Guest guest]

Hi Dawn,

I had terrible heartburn with my first pregnancy and now that I remember GERD

too. I carried Malox In my purse and drank it straight from the bottle. I was

prepared with the second pregnancy but had no heartburn at all. The doctors

gave me something different but I can't remember the name of it. Fortunately

didn't need it that time.

Have you tried eating just mashed potatos? That was the only thing that didn't

seem to cause me problems after my first attack of GE. I will worry about you

so please update your condition. Being dehydrated and hurting on top of trying

to care for two kids can't be enjoyable. Hope you have a local support group.

I.e. friends, church.

Judy

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really

don't understand all the technical things you mention but I do know how hard it

is to be a Mother taking care of an ill child. My heart goes out to you. I

hope all will be well. By the way, good luck with your move. My husband was in

the Marine Corps so I know a little about that too.

Judy

[Guest guest]

Spencer's white count is always on the very low side and Eos's on the high side.

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really

don't understand all the technical things you mention but I do know how hard it

is to be a Mother taking care of an ill child. My heart goes out to you. I

hope all will be well. By the way, good luck with your move. My husband was in

the Marine Corps so I know a little about that too.

Judy

[Guest guest]

About eo testing. All it is is a CBC w Diff. However my Allergist likes to

get an absolute Eosinophil count. With the Diff it is a percentage which can be

really misleading if your white count is high. Besides that the Eosinophils are

part of that White count so the percentage is just a rough stab. I have had

high Eos and had the percentage show in normal range. Since I was diagnosed I

seem to have higher than normal White count al the time. Not something to worry

about but interesting.

Judy

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really

don't understand all the technical things you mention but I do know how hard it

is to be a Mother taking care of an ill child. My heart goes out to you. I

hope all will be well. By the way, good luck with your move. My husband was in

the Marine Corps so I know a little about that too.

Judy

[Guest guest]

I'm more interested in yours right now. You might be able to call your doctor

and see if they have done any DIFFs on you. Might or might not shed some light.

You cant take care of Spencer if you are sick.

Judy

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I

really don't understand all the technical things you mention but I do know how

hard it is to be a Mother taking care of an ill child. My heart goes out to

you. I hope all will be well. By the way, good luck with your move. My

husband was in the Marine Corps so I know a little about that too.

Judy

[Guest guest]

That is pretty much how I suffer too.

I am 29 weeks, dialated to 1 now. The doctor is hoping for 2 more weeks, on

complete bedrest now.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due

December 24)

Re: [eosinophilic gastroenteritis] support

> From: SDidinsky@...

>

> In a message dated 10/1/99 1:52:56 PM Eastern Daylight Time,

> supplyguy@... writes:

>

> << I suffer with almost everything I eat even before I was pregnant,

cramping

> and diarrhea. >>

>

> Dawn me too. I also have problems with the bowels - along the line of

> irritable bowel - but who knows.

>

> BTW - How are you feeling and how many weeks are you now?

>

> Love,

> Sharon

>

> >

[Guest guest]

Dawn,

Anywhere from 0-6 %

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I

really don't understand all the technical things you mention but I do know how

hard it is to be a Mother taking care of an ill child. My heart goes out to

you. I hope all will be well. By the way, good luck with your move. My

husband was in the Marine Corps so I know a little about that too.

Judy

[Guest guest]

Does anyone happen to know what a normal percentage of EOS in the CBC is? I

got looking through BJ's records and his EOS percentage has been high since he

was born.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis,

Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24)

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I really

don't understand all the technical things you mention but I do know how hard it

is to be a Mother taking care of an ill child. My heart goes out to you. I

hope all will be well. By the way, good luck with your move. My husband was in

the Marine Corps so I know a little about that too.

Judy

[Guest guest]

BJ's was 13% at birth and hasn't gone any lower since. Gives me more incidence

that he was born with this and it has been there all the time.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis,

Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24)

[eosinophilic gastroenteritis] support

,

Hi my name is Judy and I am new to the list. I have EG. I

really don't understand all the technical things you mention but I do know how

hard it is to be a Mother taking care of an ill child. My heart goes out to

you. I hope all will be well. By the way, good luck with your move. My

husband was in the Marine Corps so I know a little about that too.

Judy

[Guest guest]

Sharon, How old are your twins? Hope you are enjoying them. I think twins

are a blessing but they can sure be a challenge too. I have found that with

mine the challenge only grows. They are Boy Girl so have always been as

different as night and day. Even to being blonde/green to brown/brown.

About the GIs. I guess we just have to do our best to educate them. I need

to find a good web site that has info for Doctors about this Disease. The

last time I was hospitalized I was handing out copies of a medical textbook

article I had. So now that surgeon and the nurses on the floor are a little

more educated. They were contemplating surgery and that is not generally

advised according to my research. Got the article for the doctor and the

nurses asked for copies. Was there 10 days so made many friends I was

pleased that they were interested in learning more.

We have had a big turnover of Gis since my diagnosis, I know I had a couple

of them doing research. I wonder if there is any other way than one at a

time to educate the educated. It helps when they are open to listen.

Thanks for this group.

Judy

Re: [eosinophilic gastroenteritis] support

> From: SDidinsky@...

>

> Judy my twins were - Clayton 4.14 and Cole 5.5 born at 34.5 weeks.

>

> I agree this disease is probably not as rare - BUT a lot of GIs are

probably

> not aware of it, especially with adults.

>

> Love,

> Sharon

>

> >

[Guest guest]

Group,

Well, I don't sleep very well these days either. I wake up several times

during the night & have to go to the pottie, (not diarrhea). It's a vicious

cycle. If I don't eat the spells at nite are much less, but how long can a

person not eat.

I have had some really interesting new symptoms lately. On Saturday nite

the 11th of September, I started having this jiggling sensation in my head.

It was just like my brain was jiggling around. I was afraid to go to bed.

Scared that I might seize or something in the night. It was pretty weird &

scarey too. I have had this sensation constantly for over 2 weeks now. I'm

sure it won't be long now. I guess I should get my affairs in order here.

That is how I plan to spend this weekend. Writing letters of to all my dear

friends & family, to be sent later when things aren't so good anymore. I am

also making a video tape to give to each of my children. Hopefully to

provide comfort to them when I am no longer here. If these items aren't read

or viewed for many years-that would be great-but not likely. I keep looking

for an answer to my situation-but it isn't very encouraging. Orphan

conditions & their outcomes are not well documented. So, I don't even know

what to expect next or how much time there is left. Hopefully years.

I do get so very much from this list & am grateful for the support & comfort

that it has given me this past year. Thanks to you all !!!

Multi-system involvement of this eosinophilic condition gives no promises.

I'm just fearful to go to sleep & not wake up, as the spells tend to be worse

at night. I'm also worried about something bad happening at work. I'm not

sure I want a huge scene like that to happen & also not sure if my co-workers

would have a clue what to do for me. I did type up a note card-on hot pink

paper & put it by my phone at my desk. It contains pertinent info on my

condition, including do's & don'ts. It may make the difference for me with

regards to how medical professionals treat me in a really bad spell situation.

I wish you all well & much betters days ahead!!!!

Take Care U,

in Iowa

(Camp878904)

[Guest guest]

,

I'm sorry you're having such a rough time! I really really think you should

get it to see your doctor, however. The 'jiggling' sensation in your head

could be many things, but it sounds like vertigo and there are treatments

for this.

I'm trying to remember... what treatment are you on? Have you tried an

elimination diet? Steroids? Yours is EG, Right?

Anyway, we;re here for you. Please go to the doc and don't hesitate to

share your concerns with him/her. That's what they're there for. There are

documented cases of EG going back 10-15 years and no progression to the

nervous system has ever been documented. I've had EE for 36 years with no

progression beyond the GI tract.

Good luck. Take a hot bath and go get a cup of good coffee (if you can

tolerate that)...

(eos esophagitis/GT, former TPNr)

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

[Guest guest]

In a message dated 10/02/1999 5:12:51 PM !!!First Boot!!!,

transcription@... writes:

<<

< Man, I hate that whole " stress " thing. When I was in the hospital as a

child/teen

My mother never believed them, got some pain meds for me when I flared and

>stopped taking me to them. Then I told myself the same thing for 5-10 years

I was told everything was fine and it was in her head or stress!

Well, I listened to the DR and we have taken her to psychiatrist and they all

felt she was very well adjusted and said maybe it was stress considering all

that has gone on in the last couple of years with the baby. So, they

recommended Biofeedback

she has been going and I guess it has helped some as she learned relaxation

etc.

When I ask her how she's doing and that she has had a great week she has said

well I just don't say anything 'cause you (mom and dad) don't listen/believe

me anyway! Boy they hurt but I was only following what the DR have told us

keep her active and on her normal schedule.

>until I literally could not swallow ANYTHING except water... then tried to

swallow an >antibiotic (in front of my doctor at the time who didnt believe

me). It became >completed impacted in what turned out to be a horribly

strictured, nonfunctioning >esophagus. They were SHOCKED. I was glad there

was finally proof that my >problems were physiologic. Still, it took many

many more years, more >hospitalizations and several courses of TPN before the

correct diagnosis was >made. At one point my GI wanted to have my esophagus

completely removed! (He >still thinks we should do this, by the way)....

GOD I don't want this to happen to Katelyn

>I will never, ever, blame psychology for anyone's physical symptoms

again.... >Learned my lesson. You just never know.

I don't know what to do I though we were doing the right thing for her but

know I'm not so sure, The GI we go to is supposed to be very good, he's the

same DR that follows Connor however we still don't have diagnosis for him

other than sever food allergies!

Connie

PS I really don't know where to go anymore or who to trust every time I think

I'm doing the right thing for my children, I find there is more to all of

this than I can imagine. I'm very glad that there are so many adults willing

to share their experiences, otherwise I would have continued to believe that

this was all psychological for Katelyn.

>>

[Guest guest]

Man, I hate that whole " stress " thing. When I was in the hospital as a

child/teen with vomiting, and severe chest pain... when they couldnt find a

CARDIAC origin, they told me the same thing. My mother never believed them, got

some pain meds for me when I flared and stopped taking me to them. Then I told

myself the same thing for 5-10 years until I literally could not swallow

ANYTHING except water... then tried to swallow an antibiotic (in front of my

doctor at the time who didnt believe me). It became completed impacted in what

turned out to be a horribly strictured, nonfunctioning esophagus. They were

SHOCKED. I was glad there was finally proof that my problems were physiologic.

Still, it took many many more years, more hospitalizations and several courses

of TPN before the correct diagnosis was made. At one point my GI wanted to have

my esophagus completely removed! (He still thinks we should do this, by the

way).... I will never, ever, blame psychology for anyone's physical symptoms

again.... Learned my lesson. You just never know.

Steph.

Re: [eosinophilic gastroenteritis] support

ÿþ

Steph -

I don't have any significant problems now - just some mild heartburn, and

the occasional " heart attack " heartburn. I had hyperemesis when I was pregnant,

and spent a bit of time in and out of the hospital. Let me tell you, I really

hate throwing up!

As a child I had a lot of GI problems. Lots of reflux, lots of chest pain. I

was put on zantac when I was 11 or 12, and stopped taking it when I moved out of

the house. My family used to tell me I was just " under a lot of stress " and

that's why I had so many stomach aches and chest pain. Of course, 20 years ago

they didn't think kids could have reflux. Thank goodness that idea has changed!

The GI was interested in hearing my family history because he is hoping that

my history will repeat itself with ... that he will outgrow this in his

teen/early adult years.

We had an confirmation of sorts of 's diagnosis 2 weeks ago. No one

would give his zantac and propulsid in the hospital, because everyone

kept forgetting to write the order. So he didn't get it for about 36 hours. When

we got him home from the hospital, we had to give him liquid valium because he

was having muscle spasms and couldn't sleep. This stuff is so vile tasting that

even pure chocolate syrup couldn't make it take better. So we were trying to

give it to him, and he got upset and started choking on it. So we got him to

cough it up, and then he threw up his meal from earlier. He had eaten about 3

hours before, and when he threw up, nothing had even begun to digest. The french

fries were still in whole pieces. They still had the potato peels on the end. So

I guess that quieted any doubts we might have had about " Is his DGE really that

slow? "

[Guest guest]

In a message dated 10/1/99 6:28:01 PM Eastern Daylight Time,

jabcogg@... writes:

<< Have you tried eating just mashed potatos? That was the only thing that

didn't seem to cause me problems after my first attack of GE >>

Jusy that is funny that you ate masked potatoes. That is one of the only

foods that got me through the pregnancy with the twins. The nurses in the

hospital always had the kitchen make more since it was one of the few foods I

ate.

Love,

sharon

[Guest guest]

In a message dated 10/1/99 9:40:12 PM Eastern Daylight Time,

jabcogg@... writes:

<< Sharon, How old are your twins? Hope you are enjoying them. I think twins

are a blessing but they can sure be a challenge too. I have found that with

mine the challenge only grows. They are Boy Girl so have always been as

different as night and day. Even to being blonde/green to brown/brown. >>

Judy:

My twins are 30 months (2 1/2) and are very different. Cole has straighter

hair and darker and Clayton's hair has lots of curls and lighter. Clayton is

also paler. Cole is taller. Also Clayton is louder and Cole very shy. Cole

looks much older - people think they are about 9 months apart.

Love,

Sharon

[Guest guest]

Re: [eosinophilic gastroenteritis] support

>

> My twins are 30 months (2 1/2) and are very different. Cole has straighter

> hair and darker and Clayton's hair has lots of curls and lighter. Clayton

is

> also paler. Cole is taller. Also Clayton is louder and Cole very shy. Cole

> looks much older - people think they are about 9 months apart.

>

> Love,

> Sharon

> You have a lot to look forward too. That was about the age mine decided

it was fun to run in different directions. They would sometimes escape and

go in opposite directions. I would stand there and try to figure out which

one was in the most immediate danger. Usually one of my neighbors would see

and come to my rescue. I would let them get the one they were closest to.

I will never forget those two laughing their heads off and running as fast

as they could go.

I always had people ask me how far apart they were and be shocked when I

said 6 minutes. They would think they were 9-12 mos apart. For years

was bigger, but now she is only 5'1 " maybe and Ted is 5'10 or 11' " . People

don't often realize that they are twins. A word about one being shy and

the other louder. Mine would switch from time to time. Gets interesting.

Do you think we have something with the mashed potatoes? LOL Do you think

they are easy to digest or just a comfort food?

Love Judy

>

[Guest guest]

Hi there,

I would like to apologize if I offended you in any way. I sent you an e-mail

that asked what was going on and I also asked if there was anyway to move you

off the list. From the bottom of my heart I am SORRY. I am new to this

group and you had every reason to slap me back to reality. I never thought

of a virus. I just thought that something was really wrong. I hope to get

to know you better and maybe even e-mail each other for support.

Thank You,

Lara