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Dawn

EG is NOT considered an immunodeficiency, one of our kids has this too.

Actually, EG/EE is just the opposite, instead of low immunoglobins,

these kids have wayyy too many IgE. One of mine has low IgG, IgM and

IgA, but astronomically HIGH IgE; thus, he is immunodeficient and

allergic at the same time.

Bizarre, I know.

I hope that answers your question.

SJHarlow@...

http://www.c4isr.com/harlow

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Dawn wrote:

>

>

>

> Does anyone know if EG is considered an immunodeficiency?

>

> Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

> gastroenteritis, fundo 10/96)

>

> Dawn, I've wondered that same question, and I think the answer is that

nobody knows for sure. If anybody does, it would probably be a

specialist in immune deficiencies. There are so many different

deficiencies that a complete work-up for them all would probably take a

lot of time and might have to be done at some medical center or other.

Why don't you ask your doctor about that?

It seems to me that most doctors think of it as some sort of allergy,

meaning food intolerance. However, I also wonder if all cases of EG

share the same cause?

Good call!

Millikin

Peoria, IL

millikin@...

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Dawn

An allergy is an " overactive " immun response to the allergen; however,

it does not relate to actual cell mediated immunity. There are

different immunoglobulins (bug fighters), IgG,IgM and IgA are the

biggies and IgE relates only to allergic responses.

Yes, the immune deficient kid has a totally different diganosis from the

EE. Our entire family has bee worked up for any possible connection

between the two and nothing was found there.

The prednisone in high doses (2mg/kg) definitely suppresses the immue

system. our kids are on 1mg/kg and that TECHNICALLY does not make the

" immune supressed " but all of us on this list know our kids tend to get

sick while on it.

Did you check out getting the military to send you to where you need to

go?

SJHarlow@...

http://www.c4isr.com/harlow

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----------

> From: SJHarlow@...

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

> Subject: [eosinophilic gastroenteritis] Re: Question

> Date: Wednesday, August 19, 1998 4:31 PM

>

> Dawn

>

> EG is NOT considered an immunodeficiency, one of our kids has this too.

So this is an entirely different diagnosis for one of your kids? The

reason I asked was that our case manager had said there was a foundation

but they only helped if it was an immunodeficiency disorder.

> Actually, EG/EE is just the opposite, instead of low immunoglobins,

> these kids have wayyy too many IgE

So, are these kids with EG/EE supposed to have good immunity?

certainly doesn't even before starting on the Prednisone but some of that

may be related to the prematurity. Is IgE a level of immunity?

Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

gastroenteritis, fundo 10/96)

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has had a complete immunity work up which were all normal but I can

tell you by no means, does he have a normal immune system.

Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

gastroenteritis, fundo 10/96)

----------

>

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

> Cc: gtube@...

> Subject: [eosinophilic gastroenteritis] Re: Question

> Date: Wednesday, August 19, 1998 5:35 PM

>

>

>

> Dawn wrote:

> >

> >

> >

> > Does anyone know if EG is considered an immunodeficiency?

> >

> > Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

> > gastroenteritis, fundo 10/96)

> >

> > Dawn, I've wondered that same question, and I think the answer is that

> nobody knows for sure. If anybody does, it would probably be a

> specialist in immune deficiencies. There are so many different

> deficiencies that a complete work-up for them all would probably take a

> lot of time and might have to be done at some medical center or other.

> Why don't you ask your doctor about that?

>

> It seems to me that most doctors think of it as some sort of allergy,

> meaning food intolerance. However, I also wonder if all cases of EG

> share the same cause?

>

> Good call!

>

>

>

> Millikin

> Peoria, IL

> millikin@...

>

>

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

>

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also is on 1mg/kg. We have also been told on this dose, we have no

worries as to long term effects or suppressed immunity. I notice the

difference, gets sicker much easier on the Prednisone.

Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

gastroenteritis, fundo 10/96)

----------

> From: SJHarlow@...

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

> Subject: [eosinophilic gastroenteritis] Re: Question

> Date: Wednesday, August 19, 1998 9:21 PM

>

> Dawn

>

> An allergy is an " overactive " immun response to the allergen; however,

> it does not relate to actual cell mediated immunity. There are

> different immunoglobulins (bug fighters), IgG,IgM and IgA are the

> biggies and IgE relates only to allergic responses.

>

> Yes, the immune deficient kid has a totally different diganosis from the

> EE. Our entire family has bee worked up for any possible connection

> between the two and nothing was found there.

>

> The prednisone in high doses (2mg/kg) definitely suppresses the immue

> system. our kids are on 1mg/kg and that TECHNICALLY does not make the

> " immune supressed " but all of us on this list know our kids tend to get

> sick while on it.

>

> Did you check out getting the military to send you to where you need to

> go?

>

> SJHarlow@...

> http://www.c4isr.com/harlow

>

>

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I know it can be considered a disease of the immune system, but, beyond

that, i am unsure.

>From bounce-eosinophilic gastroenteritis--673-lkippes=hotmail.com (AT) onelist (DOT) com Wed

Aug 19 11:12:31 1998

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[209.176.173.23]) by konza.flinthills.com (8.9.0/8.9.0) with ESMTP id

NAA29414 for eosinophilic gastroenteritis (AT) onelist (DOT) com>; Wed, 19 Aug 1998 13:11:51

-0500 (CDT)

>Message-Id: 199808191811.NAA29414@...>

>

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

>Date: Wed, 19 Aug 1998 13:25:08 -0500

>X-MSMail-Priority: Normal

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>X-Mailer: Microsoft Internet Mail 4.70.1162

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>Subject: [eosinophilic gastroenteritis] Question

>

>

>

>Does anyone know if EG is considered an immunodeficiency?

>

>Dawn, mommy to Dakota, 6(going on 20) and , 2-1/2 (eosinophilic

>gastroenteritis, fundo 10/96)

>

>

>

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

>

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That was my question! I strongly believe that my son's is caused by

oxygen being cut off at birth. All my research has shown this is quite

possible.

>

>

>

>It seems to me that most doctors think of it as some sort of allergy,

>meaning food intolerance. However, I also wonder if all cases of EG

>share the same cause?

>

>Good call!

>

>

>

> Millikin

>Peoria, IL

>millikin@...

>

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Arissa's oxygen was cut off at birth also. Sorry to hear Riley has had a

relapse. Good luck at the doc on monday.

phyllis

At 09:44 PM 8/21/98 PDT, you wrote:

>

>

>

>That was my question! I strongly believe that my son's is caused by

>oxygen being cut off at birth. All my research has shown this is quite

>possible.

>

>

>>

>>

>

>>

>>It seems to me that most doctors think of it as some sort of allergy,

>>meaning food intolerance. However, I also wonder if all cases of EG

>>share the same cause?

>>

>>Good call!

>>

>>

>>

>> Millikin

>>Peoria, IL

>>millikin@...

>>

>

>

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

>

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In a message dated 98-08-22 00:46:02 EDT, you write:

<<

That was my question! I strongly believe that my son's is caused by

oxygen being cut off at birth. All my research has shown this is quite

possible. >>

Clayton dropped into the birth cannal at 20 weeks and there is a good

possibility that his O2 was cut off for a time - thus all his problems

love,

sharon

mommy to Jake (5) and fraternal twins (3/30/97) - Cole -(nda)

and Clayton (eosinophil gastroenteritis, food allergies, g-tube, Nissen and

possible latex allergy, some dd and undiagnosed neuro issues)

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I believe dura mater is the casing used to wrap around a cadaver during

surgery so fluids don't leak out. Someone correct me if I'm wrong. Thanks.

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Bill,

My understanding is that the CJD Foundation IS a national organization,

though a small one (with no paid staff). Such an organization doesn't

have to be incorporated in all fifty states. Mel is right that it is a

lot less work to form chapters than to form new organizations. However,

being a chapter also involves a lot of paperwork (each would have to have

an annual audit or review by an independent accountant, submit annual

reports--and pay annual fees--to the state charities bureau, etc.). Does

anyone know how NORD is making out since it decided to start a chapter

network? (This is an organization that represents all the " rare

disorders. " ) Their base of support is much broader than ours, but their

experience might give us a sense of the pros and cons of a chapter-based

vs. national group.

Elaine

>> From: VILIK64@...

>>

>> Would we have to form another foundation or can we join with Flordia

>and try

>> to make it national.

>>

>> Bill

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Elaine, good point about chaptrers vs national. If I read you correctly, Fla.

you believe is national. Should we convince CJD Florida to open up , all

states could then become a chapter under the CJD Florida Foundation......am I

right?

Bill

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Autumn-

I think the earlier answer was right. I say I think because often things

have the same name, or a similar name. I KNOW that there IS dura mater

surrounding the brain. The Dura Mater, or " tough mother, " is the stronger of

the three layers of distinctly different tissue surrounding the brain,

within the cranium. The arachnoid mater, or " spider mother " is thicker, but

not solid. It looks like a spider web, actually. The pia mater, which lies

closest (proximal) to the brain, is very tender. These three layers are the

meninges, which is what gets infected when someone has meningitis. If these

layers swell, which is normal with an infection, then the brain is squished,

since they are all inside the skull, which can not swell.

(That's off-topic, though.)

Does anyone know why dura mater would be used in place of some other tissue?

What makes it applicable for other uses? What are some of the other uses it

has been used for? (Just curious.)

> Re: Question

>

>

> From: Aut4umn@...

>

> I believe dura mater is the casing used to wrap around a cadaver during

> surgery so fluids don't leak out. Someone correct me if I'm

> wrong. Thanks.

>

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

>

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<<

I believe dura mater is the casing used to wrap around a cadaver during

surgery so fluids don't leak out. >>

Autumn:

A cadaver is a dead body. Dura mater used to be or still is [?] obtained

from cadavers to use during surgeries. :) Liz.

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,

It seems as if the American bands and the Swedish Bands are filled around

the same time 4 Weeks after a month on a liquid diet then 4 weeks of soft

foods but the Australia bands seem like its 4 months before the first fill

Y? I do not know just a difference of doctors? Ken

Question

>

>

>I have heard from some one that bands are being filled in the first 4

>weeks after surgery

>( there doesn't seem to be any set guide lines with fills as they vary

>so much..country to country

>Dr to Dr ) can any one enlighten me on this??? please.....

>

>

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

>Did you know that we have over 85,000 e-mail communities at Onelist?

>http://www.onelist.com

>Come visit our new web site and explore a new interest

>

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,

It seems as if the American bands and the Swedish Bands are filled around

the same time 4 Weeks after a month on a liquid diet then 4 weeks of soft

foods but the Australia bands seem like its 4 months before the first fill

Y? I do not know just a difference of doctors? Ken

Question

>

>

>I have heard from some one that bands are being filled in the first 4

>weeks after surgery

>( there doesn't seem to be any set guide lines with fills as they vary

>so much..country to country

>Dr to Dr ) can any one enlighten me on this??? please.....

>

>

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

>Did you know that we have over 85,000 e-mail communities at Onelist?

>http://www.onelist.com

>Come visit our new web site and explore a new interest

>

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Does anyone know why you aren't supposed to freeze neocate juice

boxes?

I am curious about this too? I had never heard this and I would make AJ

frozen neocate pops last summer by pouring it into molds.

Thanks. Phyllis

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Andre:

Try giving him mineral oil or senacot before trying an enema - although an

pediatric enema was the only thing that worked for CLayton when he gets

stopped up. We now give him mineral oil twice a day to help prevent it -

although it still happens. If he is going every 1.5 days I am not sure that

he would have 2 pounds of stoll - especially considering that he is on a

toltal elemental diet.

Thinking of you.

Love,

Sharon

mommy to Jake (6) and fraternal twins (3/30/97) - Cole -(nda) and Clayton

(eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat),

g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues, sleep

problems, sensory integration disorder and now tremors and suspected

metabolic disorder or genetic disorder, WHEN WILL THIS END)

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In a message dated 4/22/99 1:29:24 PM Eastern Daylight Time,

andrea.allred@... writes:

<< Mineral oil, like by g-tube and how much? >>

That is how I do it - try 1 tsp twice a day. This is what we give Clayton.

Love,

Sharon

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Hello Group,

I have a question, we are in the process of wining Spencer down on steroids

to every other day. Well, we are just waiting for his symptoms to come

back. He has not been pooping very much lately (like every 1.5 days) They

are loose stools. Usually when he get's too low on steroids he has stools

constantly. We are also monitoring his weight and we had not weighed him

for two weeks and all of a sudden he gained 2 lbs.. I wondering if he was

backed up in stools. Since I have not weighed him yet I don't know. Well,

today he stooled out diarrhea and very hard stool combined. Could it be

that because he was collecting stool and that is the reason for the weight

gain and should I concider giving him an enema to get the rest of the hard

stuff out. (It looked like he couldn't get the rest out). He is not in

ton's of pain but we are really doing a final trial of his weight gain to

see if we can prevent him from going back onto TPN for the lack of weight

gain. I don't want them to be fooled by false weight gain. What do you all

think?

[eosinophilic gastroenteritis] Harlow update

From: SJHarlow@...

I have been so busy of late, I really haven't taken the time to update

on the chaos that is our lives.

We have had nursing support for almost two weeks now. They've been able

to staff about 70% of the time so we've actually been getting some sleep

and I've been able to take care of myself and the other kids feeds

during the day without dealing with the whole KODY issue. We tried

(again) and failed (again) trying to give Kody enteral feeds (35cc/hr).

We rested him for a week and THEY aer now trying again, aiming for 1

oz/hr for 10 hours every OTHER day. I can't stand being a part of it

anymore, it hasn't worked in four years. It's even hard on the nurses..

just waiting for him to get sick. His doc really wants to do duodenal

manometry, though Dr. and another peds GI are against it. If he's

having a good day, it will be normal and nothing will be gained. We

also have to put him through moving his GT site, they want to surgically

close his existing tract and create a new one. tpn-wise he's doing

pretty well, liver values are up then down, generally everything looks

okay though. As the days, then weeks, now months tick by, we are coming

to the sickening realization that TPN is probably going to be permanent

and therefore a terminal situation. a sobering thought.

I feel great. My G tube is healing up; feeds are going well (though I

can't handle boluses either). I've lost most of the prednisone weight.

I can't describe how wonderful it is to not have to battle with NGs or

swallowing anymore. Should hae done this YEARS ago.

Korey (7) and Killian (2) love their G tubes. They are still a bit sore

but also thrilled to be off NGs. We've tried a few foods (rice and

corn) but they have had symptoms, so we're backing off for a week or so.

(11) is beginning to balk at the Necoate juice boxes. He is

BEGGING for a Gtube now. We'll do it in the summer.

That's it for now.

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

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Hello,

Well, the thing is he usually stools out soo much more than every 1.5 days.

Usually a few times a day. But lately it has been 1.5 times a day. So

there could be a build up. I gave him a suspository and

nothing......hmmmmm. Mineral oil, like by g-tube and how much?

Love,

[eosinophilic gastroenteritis] Re: Question

>From: SDidinsky@...

>

>Andre:

>

>Try giving him mineral oil or senacot before trying an enema - although an

>pediatric enema was the only thing that worked for CLayton when he gets

>stopped up. We now give him mineral oil twice a day to help prevent it -

>although it still happens. If he is going every 1.5 days I am not sure

that

>he would have 2 pounds of stoll - especially considering that he is on a

>toltal elemental diet.

>

>Thinking of you.

>

>Love,

>Sharon

>mommy to Jake (6) and fraternal twins (3/30/97) - Cole -(nda) and Clayton

>(eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat),

>g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues, sleep

>problems, sensory integration disorder and now tremors and suspected

>metabolic disorder or genetic disorder, WHEN WILL THIS END)

>

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

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Send what of to a lab ( my shit ) they will only tell me what I am

telling you I DONT SHIT PEAS AND CORN !!!!!!!!!!!!!!!!

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

Dave & wrote:

>

>

>

> Send it off to a lab. I once swallowed a long piece of cotton and believe

> me it did not get digested.

>

> Regards

>

> At 14:46 19/05/1999 +0800, you wrote:

> >

> >

> >I have to protest!!!!! I dont shit peas and corn !!!!!!!!!!

> >

> >Dave & wrote:

> >>

> >>

> >>

> >> Oh yes you have, you're just not looking carefully enough. Every one has

> >> peas and corn in their poo. The same as we all spew up diced carrots after

> >> too much alcohol. One of life's little mysteries. Also in my kids

> >> nappies, I would often find grapes after they had easten sultanas.

> >>

> >> :56 19/05/1999 +0800, you wrote:

> >> >

> >> >

> >> >WELL!!!!! thank you for all that .....and yes I would love to know

> >> >where t goes from there on ( the shit I mean )you have done such a good

> >> >job explaining it,,can you continue....:o) I have never shitted peas and

> >> >corn ( and I do eat them ).....

> >> >

> >> >Dave & wrote:

> >> >>

> >> >>

> >> >>

> >> >> Spit has enzymes in it that start off the digestion process. Chewing

> >> >> increases the surface area of the food to allow enzyme penetration.

> Then

> >> >> the digestive juices in the stomach, not the pouch because there is

> little

> >> >> or no stomach mucosa, finish off the job and a sphincter then allows the

> >> >> chyme (digested food) to pass through to the small intestines where

> it is

> >> >> absorbed by the villi in the small intestine. Then it passes through to

> >> >> the large intestine where water absorbtion takes place and then the

> bulky

> >> >> matter, which always contains peas and corn in whole portions is

> expelled

> >> >> through the anus and down into the sewerage system. What happens to it

> >> >> after that, is on a need to know basis.

> >> >>

> >> >> Regards

> >> >> P.S. dredged this up from 15 years ago. I used to love doing medical

> >> >> essays during my nurses training.

> >> >>

> >> >> At 16:41 18/05/1999 +0800, you wrote:

> >> >> >

> >> >> >

> >> >> >Hi !

> >> >> >Where'd you go this morning?

> >> >> >

> >> >> >Anyway why do you want to know all this medical stuff?? Hell, i don't

> >> >> >know how food gets digested and I don't think I want to!

> >> >> >

> >> >> >See you friday!

> >> >> >

> >> >> >Aly

> >> >> >D'Orazio wrote:

> >> >> >

> >> >> >>

> >> >> >>

> >> >> >> I know that the saliva comes from the mouth and not the stomach,,,but

> >> >> >> seeing that the stomach acid is in the lower pouch,,this must mean

> >> >> >> that

> >> >> >> the saliva is what breaks down the contents so it can pass through

> the

> >> >> >>

> >> >> >> first pouch ( am I explaining this question properly or just

> confusing

> >> >> >>

> >> >> >> everyone ):o)

> >> >> >>

> >> >> >> Marina wrote:

> >> >> >> >

> >> >> >> >

> >> >> >> >

> >> >> >> > Dear ,

> >> >> >> >

> >> >> >> > Up to me the saliva doesn't come from the stomach. Perhaps you

> >> >> >> remember

> >> >> >> > that once I had an irritation and not even the saliva could go down

> >> >> >> the band

> >> >> >> > ? So if it can't go down, I don't know how it could come up ...

> >> >> >> because

> >> >> >> > I produced plenty of it, and had to go to the bathroom to

> " empty " my

> >> >> >> mouth

> >> >> >> > all the time.

> >> >> >> >

> >> >> >> > And also, still up to me, the stomach acids are in the lower

> >> >> >> pouch. It

> >> >> >> > seems that the food has not been mixed with acids yet in the upper

> >> >> >> pouch,

> >> >> >> > and you don't have a bad taste in your mouth after vomiting what is

> >> >> >> stuck in

> >> >> >> > your band.

> >> >> >> >

> >> >> >> > It's just my opinion, and I'm not sticking to it. ;-)

> >> >> >> >

> >> >> >> > Cheers,

> >> >> >> > Marina

> >> >> >> >

> >> >> >> >

> >> >> >>

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

> >> >> >>

> >> >> >> > ONElist: where the world talks!

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

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> >> >> >> ONElist: where the world talks!

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> >> >> >

> >> >> >

> >> >> >

> >> >> >

> >> >>

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> >> >>

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cathy,

a couple of my kids symptoms are not that severe. We did notice

complete resolution however once treated for EE

steph

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