Re: Eosinophil Colitis

January 18, 2000

Kathy,

Sharon, the list owner has a twin child that had terrible eczema but he also

had other symptoms. He was put on Neocate. I'm not sure, but I think they

switched to Elecare too. It stopped the skin problems. But crying a lot

after feeds would be an indication that there is a problem.

If your older child had elevated Eos's and had skin problems it doesn't mean

that she should be on an elemental formula.....it's the symptoms that count.

Like in Spencer's case, being 3 years old and only 19 lbs., constant stools,

gagging and retching (cause he can't vomit now) and severe belly aches these

are symptoms that you can't ignore or treat with Zyrtec type medications.

How about retesting your older child to see where the eos's are right now.

If she doesn't complain about anything when she eats or has weird bowel

movements than I really wouldn't worry.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> > > Date: Tuesday, January 18, 2000 4:52 PM

> > >

> > > Kathy,

> > >

> > > A couple of suggestions. First of all, Ross Pharmaceuticals makes a

> > product

> > > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is

> > called

> > > Elecare. I would suggest you seek that out as an alternative.

> > >

> > > I would ask and Beatrix to answer your question about whether

or

> > not

> > > one negative colon biopsy rules out for EC. I think the results can

be

> > hit

> > > and miss and there may be sections that are clear when some are not???

> > Not

> > > sure on that one. My kids (5) and I have EE (esophagus only).

> > >

> > > The one really big, huge, wonderful thing you have in your corner is

your

> > > son's weight! Hallelujah for that big boy!

> > >

> > > Most of the kids with eosinophilic diseases don't seem to have a clear

> > > hereditary link. Obviously, in my family it is distinctly different

but

> > we

> > > seem to be the exception.

> > >

> > > I would be very, very careful, however, with relying on skin testing

and

> > > blood testing for any GI link to allergy. With these eosinophilic

> > diseases,

> > > there is no proven link, and the docs should KNOW THIS. The foods you

> > are

> > > giving him with just a few exceptions tend toward the safer less

allergic

> > > foods. I would be very, very careful re-introducing anything or

> > introducing

> > > anything. Give it 5-7 days at least before you stop watching for

> > symptoms.

> > > There isnt much harm in trying it as long as you are prepared to watch

> > and

> > > take care of any possible consequences, particularly with your

doctor's

> > > blessing. However, use your mom's common sense as your guide -- I

> > strongly

> > > believe in mom's intuition on these things. Whatever you do, keep him

on

> > > Neocate (or Elecare) as long as it takes to figure out exactly what is

> > going

> > > on. If you take him off it while you try to figure out a diet, you

may

> > > never be able to get him to take it orally again and end up with

G-tubes

> > (as

> > > my entire family except hubby and one kid now have).

> > >

> > > Good luck... did I answer everything?

> > >

> > > Steph.

> > >

> > > __________________________________________________

> > >

January 18, 2000

absolutely positively agree. Breast feed until you can come up with a plan-

Steph.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

My daughter was totally breast fed for ten months. If your son is doing

well on breast milk, it would seem to me that it would be a good idea to

totally breast feed for as long as possible. You might want to check and see if

there is a LaLeche League group in your area, or some other breast feeding

support group. They would have the latest info on how long you can safely

breast feed without adding additional foods. I know this is not a long term

solution, but might give you a few more months to help him get as good a start

as possible..

Just my opinion....

Judy

[eosinophilic gastroenteritis] Eosinophil Colitis

From: anke_grunwald@...

Hi all,

my son n is five and a half months old and suffers from eosinophil

colitis

since he was born in August, 1999. I am still nursing him, however next

month

I should give him additional food.

Do you have any experience what kind of food is suitable for him? We do

not

get help from our doctor. He has not heard about the desease up to now

(we are living

in Germany), he recommends to " try out " . Is there anybody out there

whose baby is in a

similar situation?

n currently is going pretty well, he is normally gaining height and

weight.

There is very little blood left in his stools, and all symptoms of

diarrhoe

are gone (he now has stool every second day).

While nursing him, I have had a strong diet without milk or milk

product, fish,

egg, nuts, and - since december - porc meat. Without eating porc meat,

my

son is going better while leaving out milk and milk product did not

improve

his situation significantly.

Please, if you have any idea what he can eat in the future, let me know.

Best regards, Anke

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January 18, 2000

absolutely positively agree. Breast feed until you can come up with a plan-

Steph.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

My daughter was totally breast fed for ten months. If your son is doing

well on breast milk, it would seem to me that it would be a good idea to

totally breast feed for as long as possible. You might want to check and see if

there is a LaLeche League group in your area, or some other breast feeding

support group. They would have the latest info on how long you can safely

breast feed without adding additional foods. I know this is not a long term

solution, but might give you a few more months to help him get as good a start

as possible..

Just my opinion....

Judy

[eosinophilic gastroenteritis] Eosinophil Colitis

From: anke_grunwald@...

Hi all,

my son n is five and a half months old and suffers from eosinophil

colitis

since he was born in August, 1999. I am still nursing him, however next

month

I should give him additional food.

Do you have any experience what kind of food is suitable for him? We do

not

get help from our doctor. He has not heard about the desease up to now

(we are living

in Germany), he recommends to " try out " . Is there anybody out there

whose baby is in a

similar situation?

n currently is going pretty well, he is normally gaining height and

weight.

There is very little blood left in his stools, and all symptoms of

diarrhoe

are gone (he now has stool every second day).

While nursing him, I have had a strong diet without milk or milk

product, fish,

egg, nuts, and - since december - porc meat. Without eating porc meat,

my

son is going better while leaving out milk and milk product did not

improve

his situation significantly.

Please, if you have any idea what he can eat in the future, let me know.

Best regards, Anke

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January 18, 2000

absolutely positively agree. Breast feed until you can come up with a plan-

Steph.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

My daughter was totally breast fed for ten months. If your son is doing

well on breast milk, it would seem to me that it would be a good idea to

totally breast feed for as long as possible. You might want to check and see if

there is a LaLeche League group in your area, or some other breast feeding

support group. They would have the latest info on how long you can safely

breast feed without adding additional foods. I know this is not a long term

solution, but might give you a few more months to help him get as good a start

as possible..

Just my opinion....

Judy

[eosinophilic gastroenteritis] Eosinophil Colitis

From: anke_grunwald@...

Hi all,

my son n is five and a half months old and suffers from eosinophil

colitis

since he was born in August, 1999. I am still nursing him, however next

month

I should give him additional food.

Do you have any experience what kind of food is suitable for him? We do

not

get help from our doctor. He has not heard about the desease up to now

(we are living

in Germany), he recommends to " try out " . Is there anybody out there

whose baby is in a

similar situation?

n currently is going pretty well, he is normally gaining height and

weight.

There is very little blood left in his stools, and all symptoms of

diarrhoe

are gone (he now has stool every second day).

While nursing him, I have had a strong diet without milk or milk

product, fish,

egg, nuts, and - since december - porc meat. Without eating porc meat,

my

son is going better while leaving out milk and milk product did not

improve

his situation significantly.

Please, if you have any idea what he can eat in the future, let me know.

Best regards, Anke

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January 18, 2000

Hi Kathy;

Yes has bad eos and he is not on steroids but on another drug that

is not approved in the USA.

He was so bad for months putting out blood every time he ate I thought I

was going mad. Finally after they biopsied they realised the EOS. To make

things worse his blood levels are really not that high. Just something my

son is famous for. Never by the book. He has short gut too due to

Hirschsprung disease so that is no help.

Right now he has had low grade fevers since he was sick with an unknow bug

in November. I was just whining to his GI doc. So this is her thought.

Either the virus really put his bowel in a spin so that she is thinking of

changing the allergy drug. Also she figure he might be treated more as an

inflamatory bowel disease and also hopes maybe something else is causing

things to go wrong like sinusitis. All I know is that he is so pale and

that he doubles over in pain every time he eats. I can't even try giving

him Neocate by g tube and we are full TPN again with eating as little as

possible. I am ready to scream and to top it off his hydration fluids are

running at high gear to keep him hydrated. Nothing really is making much

sense anymore. All I know that I never have looked forward to a scope as

much as I am now. She thinks they will do it soon. My soon and their soon

is two different things. Oh god I hate this waiting and meanwhile he

doesn't even last an hour at school. I got nursing now and yet I can't seem

to get anything done. Its been 7 years of hell of one thing or anther and I

find the older he gets the more severe things are getting. Am I the only

one or do others feel this way too. No one really to compare him too since

he has such a short screwed up gut. Darn it I am whining again. Well not

mean to depress you but its a really difficult thing to deal with EOS. It

is hereditary in our case and runs with the asthma gene. SO AI know I am

not much help. We just seem to keep trouble shooting but never getting ahead.

Beatrix

January 18, 2000

Steph,

Was this message intended for me? I didn't ever suggest putting Mackenzie

through a endo??? Or did I? I think I was talking about Kathy's child and

their problems. I think you have to start somewhere and the evidence is in

the colon (in this instance). Then go from there.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> >> Date: Tuesday, January 18, 2000 4:52 PM

> >>

> >> Kathy,

> >>

> >> A couple of suggestions. First of all, Ross Pharmaceuticals makes a

> >product

> >> identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is

> >called

> >> Elecare. I would suggest you seek that out as an alternative.

> >>

> >> I would ask and Beatrix to answer your question about whether or

> >not

> >> one negative colon biopsy rules out for EC. I think the results can be

> >hit

> >> and miss and there may be sections that are clear when some are not???

> >Not

> >> sure on that one. My kids (5) and I have EE (esophagus only).

> >>

> >> The one really big, huge, wonderful thing you have in your corner is

your

> >> son's weight! Hallelujah for that big boy!

> >>

> >> Most of the kids with eosinophilic diseases don't seem to have a clear

> >> hereditary link. Obviously, in my family it is distinctly different but

> >we

> >> seem to be the exception.

> >>

> >> I would be very, very careful, however, with relying on skin testing

and

> >> blood testing for any GI link to allergy. With these eosinophilic

> >diseases,

> >> there is no proven link, and the docs should KNOW THIS. The foods you

> >are

> >> giving him with just a few exceptions tend toward the safer less

allergic

> >> foods. I would be very, very careful re-introducing anything or

> >introducing

> >> anything. Give it 5-7 days at least before you stop watching for

> >symptoms.

> >> There isnt much harm in trying it as long as you are prepared to watch

> >and

> >> take care of any possible consequences, particularly with your doctor's

> >> blessing. However, use your mom's common sense as your guide -- I

> >strongly

> >> believe in mom's intuition on these things. Whatever you do, keep him

on

> >> Neocate (or Elecare) as long as it takes to figure out exactly what is

> >going

> >> on. If you take him off it while you try to figure out a diet, you may

> >> never be able to get him to take it orally again and end up with

G-tubes

> >(as

> >> my entire family except hubby and one kid now have).

> >>

> >> Good luck... did I answer everything?

> >>

> >> Steph.

> >>

> >> __________________________________________________

> >>

January 18, 2000

Our doc always asks, if Spencer's eos's are high, if he is having symptoms. So

I really, really don't think there is a correlation involved there. But really

confusing.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> Date: Tuesday, January 18, 2000 2:27 PM

>

> I am new to this list as of about two or so weeks ago. I am now

> interested in writing, after getting Anke's letter. I'm still unsure if

> I belong on this list or not (my husband signed me up). Maybe you all

> could give your input. My fourth child, Luke, is almost 16 months old.

> Here is a bit of his history. Luke had horrible eczema, dermatitis

> (whatever) from birth and was switched from a milk based formula (I did

> not nurse) at the age of 2 months because of his skin problem. He also

> would cough a lot while drinking his bottle and occasionally would expel

> this clear fluid (if only we knew then what we know now!). So, anyway,

> he switched to a soy formula and his skin didn't improve much (or at

> all), nothing else SEEMED wrong. At his 5 month check up, my

> pediatrician noticed Luke was very pale and did a quick hemoglobin test

> on him. The red flags went up immediately because his test showed him

> at 8.5. My ped ordered a complete blood test on him since a lack of

> iron wouldn't cause such a low blood count. The blood was taken the

> next day and my ped called me back with the results that evening and his

> hemoglobin was 7.1, and his eosiniphil count was about 19 (I've seen

> others write the EOS in terms of thousands, I don't know how to

> calculate this - the docs always give it to me in terms of teens, can

> anybody tell me what that means?). The next day he was at Children's

> Memorial Hospital in Chicago (Thank God) and Hematology ran a blood test

> and his hemoglobin was 6.8. All this time I was barely able to speak

> (or sleep or eat), as I was gripped with fear like I've never known. I

> thought my baby was dying. Hematology ultimately determined it was an

> allergy to his formula that was causing intestinal bleeding; his stools

> were strongly positive for blood. I guess when the bleeding is

> intestinal you can't see the blood in the stools, but when it's in the

> colon you can. Am I correct? I never saw any blood in his diapers. He

> was put on Neocate formula (tastes AWFUL, but he got used to it). We

> were told to avoid all soy and milk products. The only other thing I

> suspect Luke may be allergic to is possibly sweet potatoes and turkey.

> His hemoglobin bottomed out a few days later to 6.1. Every doctor we

> saw said he was a canidate for a transfusion, but since he was so alert

> (thank God, again) they didn't want to do it. It was very scary to have

> to watch for " signs " of distress. I told my husband it was like being

> pregnant for the first time and wondering if you were really going to be

> able to recognize having true labor, when you really have no idea what

> labor feels like. I didn't sleep because I kept checking him and

> listening for him. So, anyway he went on this Neocate and things took a

> REALLY LONG TIME to improve. He was put under the care of a

> Gastroenterologist at Children's. His ultimate diagnosis was " Cows milk

> protien and Soy protien intolerance " . It was labeled an " intolerance "

> because his IGE(?) level was normal. He was seen by an allergist at

> Childrens and a RAST test (the blood test to test for allergies) was

> done on him for allergies to soy, milk, eggs, wheat, and one other thing

> (I can't remember) and all came up negative for allergies. The

> Gastroenterologist did a colon biopsy on him and told me things looked

> good and there was EOS in his colon, and did not seem surprised. She

> never mentioned EOS colitis. She told me he had colitis due to his

> problem. So now, after listening to all of you talk back and forth, you

> don't think it's possible he has this EOS colitis, do you? Surely she

> would know, being at CMH in Chicago and being a pediatric Gastro doctor,

> right? His EOS at one time got down to 9 and I was very excited, but at

> his last big blood test a few months ago, it was up to 18 again. Just

> what number is considered a high EOS? Is Luke really not that high

> compared to your children? The great news is about 3 weeks ago my ped

> tested his hemoglobin and for the first time in almost a year he tested

> normal at 11.5. We have been very excited about that. I should note

> that Luke has no other problems and is a very healthy, off the chart

> sized toddler. He hangs out in the 95% for height and 40% for weight

> (just like our 7 year old daughter did - not like mom!). Luke continues

> to have his " intolerances " . Whenever we have tried to re-introduce milk

> to him he throws up a TON of clear mucous. He continues on the Neocate

> (which is VERY expensive and our insurance won't cover a bit of it).

> Feeding a child and having to avoid BOTH milk and soy is very

> difficult. The first thing we gave him was rice, but it had to be

> " Earth's Best " rice, because the Gerber brand has milk derivitives in

> it. He loves oatmeal and is not a fan of fruits and vegetables, but I

> sneak them in the oatmeal. We buy him lunchmeat (pork, chicken) and he

> loves pasta with my husbands homemade meat sauce (beef). Other than

> that he can have rice cakes, cheerios, Crispix, marshmellows, homemade

> bread (you can't buy harly anything without milk or soy in it!). I am

> very open to food suggestions!!! Does anybody have an opinion on Goat's

> milk? I gave him 3 oz. of it two days ago and about 1 oz. yesterday and

> so far 2 oz. today. I am not YET seeing a reaction. My ped said I

> could try soy again, but he had his worst reaction when on the soy

> formula. I'm thinking I need some advice from his gastro doc again

> before proceeding with trying soy. I KNOW he can't handle milk. The

> gastro doc was very confident Luke would outgrow his " intolerances " by

> age 2. There are no known cases of allergies or asthma in EITHER my

> husbands family or mine ---- where did this come from???? Do you think

> it will go away? Do you think he could develop asthma? When does that

> usually happen? His skin is really good these days, although we suspect

> that MAYBE soy brings on outbreaks. He also saw a dermatologist at

> Children's who put him on Zyrtec (what a miracle) and gave him a

> corticosteriod cream (also a miracle). We use both only when we HAVE

> to.

>

> I sincerely apologize for writing such a long email. I won't do it

> again, but felt I needed to give you some of his background to get these

> EOS questions answered.

>

> Kathy, mommy to (8), (7), (nearly 4), and Luke (16

> mos. on Jan. 20) These children are my treasures and I also want to say

> quickly and most sincerely, that when I read what some of you mothers

> are going through with your children, my heart really goes out to you.

> The immune system is such a big, fat question mark! I have kept you all

> in my prayers.

>

> anke_grunwald@... wrote:

> >

> > From: anke_grunwald@...

> >

> > Hi all,

> >

> > my son n is five and a half months old and suffers from

eosinophil

colitis

> > since he was born in August, 1999. I am still nursing him, however

> > I should give him additional food.

> > Do you have any experience what kind of food is suitable for him? We

do

not

> > get help from our doctor. He has not heard about the desease up to now

(we are living

> > in Germany), he recommends to " try out " . Is there anybody out there

whose baby is in a

> > similar situation?

> >

> > n currently is going pretty well, he is normally gaining height

and weight.

> > There is very little blood left in his stools, and all symptoms of

diarrhoe

> > are gone (he now has stool every second day).

> >

> > While nursing him, I have had a strong diet without milk or milk

product, fish,

> > egg, nuts, and - since december - porc meat. Without eating porc meat,

my

> > son is going better while leaving out milk and milk product did not

improve

> > his situation significantly.

> >

> > Please, if you have any idea what he can eat in the future, let me

know.

> >

> > Best regards, Anke

> >

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

January 18, 2000

Kathy,

A couple of suggestions. First of all, Ross Pharmaceuticals makes a product

identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is called

Elecare. I would suggest you seek that out as an alternative.

I would ask and Beatrix to answer your question about whether or not

one negative colon biopsy rules out for EC. I think the results can be hit

and miss and there may be sections that are clear when some are not??? Not

sure on that one. My kids (5) and I have EE (esophagus only).

The one really big, huge, wonderful thing you have in your corner is your

son's weight! Hallelujah for that big boy!

Most of the kids with eosinophilic diseases don't seem to have a clear

hereditary link. Obviously, in my family it is distinctly different but we

seem to be the exception.

I would be very, very careful, however, with relying on skin testing and

blood testing for any GI link to allergy. With these eosinophilic diseases,

there is no proven link, and the docs should KNOW THIS. The foods you are

giving him with just a few exceptions tend toward the safer less allergic

foods. I would be very, very careful re-introducing anything or introducing

anything. Give it 5-7 days at least before you stop watching for symptoms.

There isnt much harm in trying it as long as you are prepared to watch and

take care of any possible consequences, particularly with your doctor's

blessing. However, use your mom's common sense as your guide -- I strongly

believe in mom's intuition on these things. Whatever you do, keep him on

Neocate (or Elecare) as long as it takes to figure out exactly what is going

on. If you take him off it while you try to figure out a diet, you may

never be able to get him to take it orally again and end up with G-tubes (as

my entire family except hubby and one kid now have).

Good luck... did I answer everything?

Steph.

__________________________________________________

January 18, 2000

I feel like I've spent a day in front of this computer! I am finding

all this EOS information very helpful. Especially when you talk of

symptoms combined with the EOS levels. Luke really is a comfortable,

happy toddler. Even when he drinks milk (when we attempt to

re-introduce it) he doesn't even get crabby, he wants to be held because

he's nausiated and then, of course, spews this clear mucous, and goes

right back to playing. We hardly ever give him Zyrtec or even use the

corticosteriod cream for his skin. However, given his last blood test,

his EOS is very high. I suppose at some point we should return to CMH

and get him checked out. Of course, my main concern when it comes to

feeding him is what if he's reacting to something and I don't know it -

as was the case when he was on the soy formula. Here is this kid

bleeding to death and I was completely unaware! I suppose if we are to

try soy again, his stools should be checked regularly, which my ped is

always willing to do. He's doing so well I hesitate to change

anything. He's 24 pounds, which is about average for 16 month old I

suppose. I guess his stools were black back when he was bleeding, but

sometimes stools are dark anyway, so that's why I'd be really afraid to

judge by looking at them. I wish there was a way I could test them on

my own and not have to take samples into the doc.

jones5 wrote:

>

> Dakota's eosinophil level has always been 10% which is high and she has

> never had a problem.

> Dawn

>

> ----------

> >

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

> > Subject: Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> > Date: Tuesday, January 18, 2000 6:36 PM

> >

> > YES YOU CAN HAVE ELEVATED BLOOD EOS LEVELS AND NOT HAVE A DISEASE.

> Sorry,

> > I didnt read that all the way through earlier.

> >

> > People who are, for example, having a hayfever attack, will have sky-high

> > IgE and blood eos levels...

> >

> > Some people have both elevated with no smptoms of anything.

> >

> > Steph.

> >

> > Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> >

> > >

> > >Steph and ,

> > >

> > >Thanks for your response and so quickly. , didn't you have to run

> > >Spencer to the ER? Is he ok?

> > >

> > >I am going to investigate this Elecare and wish I would have heard about

> > >it a year ago - why didn't my doc (the gastro) suggest it? Is it newer

> > >than Neocate? My ped had never even heard of Neocate until Luke. I

> > >hope it doesn't taste different than Neocate (Luke is happy with

> > >Neocate). , why do you and your children have g-tubes? Is it

> > >because you can't stand the taste of the formula? Do you have a special

> > >formula to drink? Why couldn't a person just eat the foods they don't

> > >react to and take a multivitamin?

> > >

> > >Are LUke's EOS numbers high to you (18)? The allergist completely shook

> > >her head about the EOS thing (the " I don't know why they even sent you

> > >here " kind of shake).

> > >

> > >I must have typed the colon biopsy part unclearly. His colon biopsy

> > >came up positive for EOS (that was back in March or April of last

> > >year). I remember the Gastro doc saying something to me when I

> > >expressed my disbelief that an " intolerance " can cause intestinal

> > >bleeding, she said there was a real controversy in the medical field

> > >just where an intolerance ends and a allergy begins. She told me he

> > >would be more likely to outgrow an intolerance than an allergy (this

> > >doesn't seem to be the case hearing from Steph, who has normal IgE,

> > >right?). Seems to me these allergies and intolerances are about the

> > >same thing. Luke's Gastro doc never mentioned an EOS disease, but if

> > >his EOS continues to be high should I expect them to do another colon

> > >biopsy? Is it at that time he could be diagnosed with an EOS disease?

> > >I guess what I'm trying to say or ask is, does anybody ever just have an

> > >elevated EOS, but not have a disease? I bet a lot of what I say sounds

> > >uneducated to those of you who have studied this so much. Sorry.

> > >

> > > Allred wrote:

> > >>

> > >> Kathy,

> > >>

> > >> One more thing......none of this that Spencer has runs in any part of

> me

> > or

> > >> my husbands family.

> > >>

> > >> Also one negative result from biopsies would indicate that at that

> point

> > you

> > >> either got a good spot in the colon or (by looking at how he is doing

> as

> > far

> > >> as symptoms) that the Neocate is doing what it is supposed to do.

> That

> > >> would be a good thing as it shows that you probably won't have to go

> down

> > >> the route of introducing steroids to make it go away (My son has to be

> on

> > >> them as well as IV nutrition).

> > >>

> > >> I would suggest trying the Elecare too. I know of a lot of people

> that

> > have

> > >> switched from Neocate to Elecare.

> > >>

> > >> My son is also on Zyrtec and he has developed very bad asthma.

> > >>

> > >> Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> > >>

> > >> >

> > >> > Kathy,

> > >> >

> > >> > A couple of suggestions. First of all, Ross Pharmaceuticals makes a

> > >> product

> > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is

> > >> called

> > >> > Elecare. I would suggest you seek that out as an alternative.

> > >> >

> > >> > I would ask and Beatrix to answer your question about whether

> or

> > >> not

> > >> > one negative colon biopsy rules out for EC. I think the results can

> be

> > >> hit

> > >> > and miss and there may be sections that are clear when some are

> not???

> > Not

> > >> > sure on that one. My kids (5) and I have EE (esophagus only).

> > >> >

> > >> > The one really big, huge, wonderful thing you have in your corner is

> > your

> > >> > son's weight! Hallelujah for that big boy!

> > >> >

> > >> > Most of the kids with eosinophilic diseases don't seem to have a

> clear

> > >> > hereditary link. Obviously, in my family it is distinctly different

> but

> > we

> > >> > seem to be the exception.

> > >> >

> > >> > I would be very, very careful, however, with relying on skin testing

> > and

> > >> > blood testing for any GI link to allergy. With these eosinophilic

> > >> diseases,

> > >> > there is no proven link, and the docs should KNOW THIS. The foods

> you

> > are

> > >> > giving him with just a few exceptions tend toward the safer less

> > allergic

> > >> > foods. I would be very, very careful re-introducing anything or

> > >> introducing

> > >> > anything. Give it 5-7 days at least before you stop watching for

> > >> symptoms.

> > >> > There isnt much harm in trying it as long as you are prepared to

> watch

> > and

> > >> > take care of any possible consequences, particularly with your

> doctor's

> > >> > blessing. However, use your mom's common sense as your guide -- I

> > >> strongly

> > >> > believe in mom's intuition on these things. Whatever you do, keep

> him

> > on

> > >> > Neocate (or Elecare) as long as it takes to figure out exactly what

> is

> > >> going

> > >> > on. If you take him off it while you try to figure out a diet, you

> may

> > >> > never be able to get him to take it orally again and end up with

> > G-tubes

> > >> (as

> > >> > my entire family except hubby and one kid now have).

> > >> >

> > >> > Good luck... did I answer everything?

> > >> >

> > >> > Steph.

> > >> >

> > >> > __________________________________________________

> > >> >

January 18, 2000

Well you did say " " lol.....check!

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> >> >> Date: Tuesday, January 18, 2000 4:52 PM

> >> >>

> >> >> Kathy,

> >> >>

> >> >> A couple of suggestions. First of all, Ross Pharmaceuticals makes a

> >> >product

> >> >> identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is

> >> >called

> >> >> Elecare. I would suggest you seek that out as an alternative.

> >> >>

> >> >> I would ask and Beatrix to answer your question about whether

> or

> >> >not

> >> >> one negative colon biopsy rules out for EC. I think the results can

> be

> >> >hit

> >> >> and miss and there may be sections that are clear when some are

not???

> >> >Not

> >> >> sure on that one. My kids (5) and I have EE (esophagus only).

> >> >>

> >> >> The one really big, huge, wonderful thing you have in your corner is

> >your

> >> >> son's weight! Hallelujah for that big boy!

> >> >>

> >> >> Most of the kids with eosinophilic diseases don't seem to have a

clear

> >> >> hereditary link. Obviously, in my family it is distinctly different

> but

> >> >we

> >> >> seem to be the exception.

> >> >>

> >> >> I would be very, very careful, however, with relying on skin testing

> >and

> >> >> blood testing for any GI link to allergy. With these eosinophilic

> >> >diseases,

> >> >> there is no proven link, and the docs should KNOW THIS. The foods

you

> >> >are

> >> >> giving him with just a few exceptions tend toward the safer less

> >allergic

> >> >> foods. I would be very, very careful re-introducing anything or

> >> >introducing

> >> >> anything. Give it 5-7 days at least before you stop watching for

> >> >symptoms.

> >> >> There isnt much harm in trying it as long as you are prepared to

watch

> >> >and

> >> >> take care of any possible consequences, particularly with your

> doctor's

> >> >> blessing. However, use your mom's common sense as your guide -- I

> >> >strongly

> >> >> believe in mom's intuition on these things. Whatever you do, keep

him

> >on

> >> >> Neocate (or Elecare) as long as it takes to figure out exactly what

is

> >> >going

> >> >> on. If you take him off it while you try to figure out a diet, you

> may

> >> >> never be able to get him to take it orally again and end up with

> >G-tubes

> >> >(as

> >> >> my entire family except hubby and one kid now have).

> >> >>

> >> >> Good luck... did I answer everything?

> >> >>

> >> >> Steph.

> >> >>

> >> >> __________________________________________________

> >> >>

January 18, 2000

You can test the stools on your own, ask your doctor about it.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> > > >>

> > > >> >

> > > >> > Kathy,

> > > >> >

> > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals

makes a

> > > >> product

> > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It

is

> > > >> called

> > > >> > Elecare. I would suggest you seek that out as an alternative.

> > > >> >

> > > >> > I would ask and Beatrix to answer your question about

whether

> > or

> > > >> not

> > > >> > one negative colon biopsy rules out for EC. I think the results

can

> > be

> > > >> hit

> > > >> > and miss and there may be sections that are clear when some are

> > not???

> > > Not

> > > >> > sure on that one. My kids (5) and I have EE (esophagus only).

> > > >> >

> > > >> > The one really big, huge, wonderful thing you have in your corner

is

> > > your

> > > >> > son's weight! Hallelujah for that big boy!

> > > >> >

> > > >> > Most of the kids with eosinophilic diseases don't seem to have a

> > clear

> > > >> > hereditary link. Obviously, in my family it is distinctly

different

> > but

> > > we

> > > >> > seem to be the exception.

> > > >> >

> > > >> > I would be very, very careful, however, with relying on skin

testing

> > > and

> > > >> > blood testing for any GI link to allergy. With these

eosinophilic

> > > >> diseases,

> > > >> > there is no proven link, and the docs should KNOW THIS. The

foods

> > you

> > > are

> > > >> > giving him with just a few exceptions tend toward the safer less

> > > allergic

> > > >> > foods. I would be very, very careful re-introducing anything or

> > > >> introducing

> > > >> > anything. Give it 5-7 days at least before you stop watching for

> > > >> symptoms.

> > > >> > There isnt much harm in trying it as long as you are prepared to

> > watch

> > > and

> > > >> > take care of any possible consequences, particularly with your

> > doctor's

> > > >> > blessing. However, use your mom's common sense as your guide --

I

> > > >> strongly

> > > >> > believe in mom's intuition on these things. Whatever you do,

keep

> > him

> > > on

> > > >> > Neocate (or Elecare) as long as it takes to figure out exactly

what

> > is

> > > >> going

> > > >> > on. If you take him off it while you try to figure out a diet,

you

> > may

> > > >> > never be able to get him to take it orally again and end up with

> > > G-tubes

> > > >> (as

> > > >> > my entire family except hubby and one kid now have).

> > > >> >

> > > >> > Good luck... did I answer everything?

> > > >> >

> > > >> > Steph.

> > > >> >

> > > >> > __________________________________________________

> > > >> >

January 18, 2000

I would love a chunky 24 lb. 16 month old baby!!!! But I love my lil micro

squirt anyway! LOL

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> > > > >>

> > > > >> >

> > > > >> > Kathy,

> > > > >> >

> > > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals

> makes a

> > > > >> product

> > > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER.

> It is

> > > > >> called

> > > > >> > Elecare. I would suggest you seek that out as an alternative.

> > > > >> >

> > > > >> > I would ask and Beatrix to answer your question about

> whether

> > > or

> > > > >> not

> > > > >> > one negative colon biopsy rules out for EC. I think the

results

> can

> > > be

> > > > >> hit

> > > > >> > and miss and there may be sections that are clear when some are

> > > not???

> > > > Not

> > > > >> > sure on that one. My kids (5) and I have EE (esophagus only).

> > > > >> >

> > > > >> > The one really big, huge, wonderful thing you have in your

> corner is

> > > > your

> > > > >> > son's weight! Hallelujah for that big boy!

> > > > >> >

> > > > >> > Most of the kids with eosinophilic diseases don't seem to have

a

> > > clear

> > > > >> > hereditary link. Obviously, in my family it is distinctly

> different

> > > but

> > > > we

> > > > >> > seem to be the exception.

> > > > >> >

> > > > >> > I would be very, very careful, however, with relying on skin

> testing

> > > > and

> > > > >> > blood testing for any GI link to allergy. With these

> eosinophilic

> > > > >> diseases,

> > > > >> > there is no proven link, and the docs should KNOW THIS. The

> foods

> > > you

> > > > are

> > > > >> > giving him with just a few exceptions tend toward the safer

less

> > > > allergic

> > > > >> > foods. I would be very, very careful re-introducing anything

or

> > > > >> introducing

> > > > >> > anything. Give it 5-7 days at least before you stop watching

> for

> > > > >> symptoms.

> > > > >> > There isnt much harm in trying it as long as you are prepared

to

> > > watch

> > > > and

> > > > >> > take care of any possible consequences, particularly with your

> > > doctor's

> > > > >> > blessing. However, use your mom's common sense as your

guide --

> I

> > > > >> strongly

> > > > >> > believe in mom's intuition on these things. Whatever you do,

> keep

> > > him

> > > > on

> > > > >> > Neocate (or Elecare) as long as it takes to figure out exactly

> what

> > > is

> > > > >> going

> > > > >> > on. If you take him off it while you try to figure out a diet,

> you

> > > may

> > > > >> > never be able to get him to take it orally again and end up

with

> > > > G-tubes

> > > > >> (as

> > > > >> > my entire family except hubby and one kid now have).

> > > > >> >

> > > > >> > Good luck... did I answer everything?

> > > > >> >

> > > > >> > Steph.

> > > > >> >

> > > > >> > __________________________________________________

> > > > >> >

January 18, 2000

, I have been wondering for a week now, what is " LOL " ? Kathy

Allred wrote:

>

> I would love a chunky 24 lb. 16 month old baby!!!! But I love my lil micro

> squirt anyway! LOL

>

> Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> > > > > >>

> > > > > >> >

> > > > > >> > Kathy,

> > > > > >> >

> > > > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals

> > makes a

> > > > > >> product

> > > > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER.

> > It is

> > > > > >> called

> > > > > >> > Elecare. I would suggest you seek that out as an alternative.

> > > > > >> >

> > > > > >> > I would ask and Beatrix to answer your question about

> > whether

> > > > or

> > > > > >> not

> > > > > >> > one negative colon biopsy rules out for EC. I think the

> results

> > can

> > > > be

> > > > > >> hit

> > > > > >> > and miss and there may be sections that are clear when some are

> > > > not???

> > > > > Not

> > > > > >> > sure on that one. My kids (5) and I have EE (esophagus only).

> > > > > >> >

> > > > > >> > The one really big, huge, wonderful thing you have in your

> > corner is

> > > > > your

> > > > > >> > son's weight! Hallelujah for that big boy!

> > > > > >> >

> > > > > >> > Most of the kids with eosinophilic diseases don't seem to have

> a

> > > > clear

> > > > > >> > hereditary link. Obviously, in my family it is distinctly

> > different

> > > > but

> > > > > we

> > > > > >> > seem to be the exception.

> > > > > >> >

> > > > > >> > I would be very, very careful, however, with relying on skin

> > testing

> > > > > and

> > > > > >> > blood testing for any GI link to allergy. With these

> > eosinophilic

> > > > > >> diseases,

> > > > > >> > there is no proven link, and the docs should KNOW THIS. The

> > foods

> > > > you

> > > > > are

> > > > > >> > giving him with just a few exceptions tend toward the safer

> less

> > > > > allergic

> > > > > >> > foods. I would be very, very careful re-introducing anything

> or

> > > > > >> introducing

> > > > > >> > anything. Give it 5-7 days at least before you stop watching

> > for

> > > > > >> symptoms.

> > > > > >> > There isnt much harm in trying it as long as you are prepared

> to

> > > > watch

> > > > > and

> > > > > >> > take care of any possible consequences, particularly with your

> > > > doctor's

> > > > > >> > blessing. However, use your mom's common sense as your

> guide --

> > I

> > > > > >> strongly

> > > > > >> > believe in mom's intuition on these things. Whatever you do,

> > keep

> > > > him

> > > > > on

> > > > > >> > Neocate (or Elecare) as long as it takes to figure out exactly

> > what

> > > > is

> > > > > >> going

> > > > > >> > on. If you take him off it while you try to figure out a diet,

> > you

> > > > may

> > > > > >> > never be able to get him to take it orally again and end up

> with

> > > > > G-tubes

> > > > > >> (as

> > > > > >> > my entire family except hubby and one kid now have).

> > > > > >> >

> > > > > >> > Good luck... did I answer everything?

> > > > > >> >

> > > > > >> > Steph.

> > > > > >> >

> > > > > >> > __________________________________________________

> > > > > >> >

January 18, 2000

,

Just remember that there is NO evidence or clinical support of elevated

blood eos levels and GI eosinophilic infiltration. They appear to be two

very different processes.

i would be oh-so-careful putting a young infant through a scope just because

of an elevated blood eos level and crabbiness after meals, ESPECIALLY AS SHE

IS GROWING SO well, mainly becuase there simply is no harm being done

waiting until she is older and the risks decrease.

S.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

>> Date: Tuesday, January 18, 2000 4:52 PM

>>

>> Kathy,

>>

>> A couple of suggestions. First of all, Ross Pharmaceuticals makes a

>product

>> identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is

>called

>> Elecare. I would suggest you seek that out as an alternative.

>>

>> I would ask and Beatrix to answer your question about whether or

>not

>> one negative colon biopsy rules out for EC. I think the results can be

>hit

>> and miss and there may be sections that are clear when some are not???

>Not

>> sure on that one. My kids (5) and I have EE (esophagus only).

>>

>> The one really big, huge, wonderful thing you have in your corner is your

>> son's weight! Hallelujah for that big boy!

>>

>> Most of the kids with eosinophilic diseases don't seem to have a clear

>> hereditary link. Obviously, in my family it is distinctly different but

>we

>> seem to be the exception.

>>

>> I would be very, very careful, however, with relying on skin testing and

>> blood testing for any GI link to allergy. With these eosinophilic

>diseases,

>> there is no proven link, and the docs should KNOW THIS. The foods you

>are

>> giving him with just a few exceptions tend toward the safer less allergic

>> foods. I would be very, very careful re-introducing anything or

>introducing

>> anything. Give it 5-7 days at least before you stop watching for

>symptoms.

>> There isnt much harm in trying it as long as you are prepared to watch

>and

>> take care of any possible consequences, particularly with your doctor's

>> blessing. However, use your mom's common sense as your guide -- I

>strongly

>> believe in mom's intuition on these things. Whatever you do, keep him on

>> Neocate (or Elecare) as long as it takes to figure out exactly what is

>going

>> on. If you take him off it while you try to figure out a diet, you may

>> never be able to get him to take it orally again and end up with G-tubes

>(as

>> my entire family except hubby and one kid now have).

>>

>> Good luck... did I answer everything?

>>

>> Steph.

>>

>> __________________________________________________

>>

January 18, 2000

I have varying blood IgE levels... they can be super-high and

normal,depending on many many factors. There is no correlation between my

blood IgE levels (and that of all 5 kids with EE) and our GI eosinophilic

inflammation.

Steph.

Re: [eosinophilic gastroenteritis] Eosinophil Colitis

>

>Steph and ,

>

>Thanks for your response and so quickly. , didn't you have to run

>Spencer to the ER? Is he ok?

>

>I am going to investigate this Elecare and wish I would have heard about

>it a year ago - why didn't my doc (the gastro) suggest it? Is it newer

>than Neocate? My ped had never even heard of Neocate until Luke. I

>hope it doesn't taste different than Neocate (Luke is happy with

>Neocate). , why do you and your children have g-tubes? Is it

>because you can't stand the taste of the formula? Do you have a special

>formula to drink? Why couldn't a person just eat the foods they don't

>react to and take a multivitamin?

>

>Are LUke's EOS numbers high to you (18)? The allergist completely shook

>her head about the EOS thing (the " I don't know why they even sent you

>here " kind of shake).

>

>I must have typed the colon biopsy part unclearly. His colon biopsy

>came up positive for EOS (that was back in March or April of last

>year). I remember the Gastro doc saying something to me when I

>expressed my disbelief that an " intolerance " can cause intestinal

>bleeding, she said there was a real controversy in the medical field

>just where an intolerance ends and a allergy begins. She told me he

>would be more likely to outgrow an intolerance than an allergy (this

>doesn't seem to be the case hearing from Steph, who has normal IgE,

>right?). Seems to me these allergies and intolerances are about the

>same thing. Luke's Gastro doc never mentioned an EOS disease, but if

>his EOS continues to be high should I expect them to do another colon

>biopsy? Is it at that time he could be diagnosed with an EOS disease?

>I guess what I'm trying to say or ask is, does anybody ever just have an

>elevated EOS, but not have a disease? I bet a lot of what I say sounds

>uneducated to those of you who have studied this so much. Sorry.

>

> Allred wrote:

>>

>> Kathy,

>>

>> One more thing......none of this that Spencer has runs in any part of me

or

>> my husbands family.

>>

>> Also one negative result from biopsies would indicate that at that point

you

>> either got a good spot in the colon or (by looking at how he is doing as

far

>> as symptoms) that the Neocate is doing what it is supposed to do. That

>> would be a good thing as it shows that you probably won't have to go down

>> the route of introducing steroids to make it go away (My son has to be on

>> them as well as IV nutrition).

>>

>> I would suggest trying the Elecare too. I know of a lot of people that

have

>> switched from Neocate to Elecare.

>>

>> My son is also on Zyrtec and he has developed very bad asthma.

>>

>> Re: [eosinophilic gastroenteritis] Eosinophil Colitis

>>

>> >

>> > Kathy,

>> >

>> > A couple of suggestions. First of all, Ross Pharmaceuticals makes a

>> product

>> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is

>> called

>> > Elecare. I would suggest you seek that out as an alternative.

>> >

>> > I would ask and Beatrix to answer your question about whether or

>> not

>> > one negative colon biopsy rules out for EC. I think the results can be

>> hit

>> > and miss and there may be sections that are clear when some are not???

Not

>> > sure on that one. My kids (5) and I have EE (esophagus only).

>> >

>> > The one really big, huge, wonderful thing you have in your corner is

your

>> > son's weight! Hallelujah for that big boy!

>> >

>> > Most of the kids with eosinophilic diseases don't seem to have a clear

>> > hereditary link. Obviously, in my family it is distinctly different but

we

>> > seem to be the exception.

>> >

>> > I would be very, very careful, however, with relying on skin testing

and

>> > blood testing for any GI link to allergy. With these eosinophilic

>> diseases,

>> > there is no proven link, and the docs should KNOW THIS. The foods you

are

>> > giving him with just a few exceptions tend toward the safer less

allergic

>> > foods. I would be very, very careful re-introducing anything or

>> introducing

>> > anything. Give it 5-7 days at least before you stop watching for

>> symptoms.

>> > There isnt much harm in trying it as long as you are prepared to watch

and

>> > take care of any possible consequences, particularly with your doctor's

>> > blessing. However, use your mom's common sense as your guide -- I

>> strongly

>> > believe in mom's intuition on these things. Whatever you do, keep him

on

>> > Neocate (or Elecare) as long as it takes to figure out exactly what is

>> going

>> > on. If you take him off it while you try to figure out a diet, you may

>> > never be able to get him to take it orally again and end up with

G-tubes

>> (as

>> > my entire family except hubby and one kid now have).

>> >

>> > Good luck... did I answer everything?

>> >

>> > Steph.

>> >

>> > __________________________________________________

>> >

January 18, 2000

YES YOU CAN HAVE ELEVATED BLOOD EOS LEVELS AND NOT HAVE A DISEASE. Sorry,

I didnt read that all the way through earlier.

People who are, for example, having a hayfever attack, will have sky-high

IgE and blood eos levels...

Some people have both elevated with no smptoms of anything.