Re: Eosinophil Colitis

January 17, 2000

Kathy,

It sounds like your hospital does the EOS test the same way ours does, in

percentages . BJ's runs from 10-20%.

Dawn, mom to Dakota, 7, Mackenzie, 2 months and BJ, 4 (eosinophilic

gastroenteritis, reflux, asthma)

----------

>

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

> Subject: 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 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

> >

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

January 17, 2000

You know Steph, I don't think that there are a lot of people on the list

who have many children after dealing with eosinophilic diseases with one

child. I, of course, had to be the one. We did blood eosinophil tests on

Mackenzie and it came back at 14%. The doctors are talking of a scope and

starting her on an elemental formula if they come back with eosinophils

which they are almost positive of. Luckily though, she eats well and

seems to gain weight pretty well. She is up to 8lbs but cries a lot after

feeds.

Dawn

----------

>

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

> Subject: 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 17, 2000

My pregnancy was TOTALLY unplannned, although I wouldn't trade her for the

world. There has been some questions about Mackenzie, mostly because of

BJ's diagnosis of EG. She gained weight very slowly and refluxed a lot

until we started thickening her formula to the point where she takes it

from an Infa Feeder. We have gotten her to gain weight this way but she

always cries a lot after eating.

Dawn

----------

>

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

> Subject: Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> Date: Tuesday, January 18, 2000 3:26 PM

>

> I'm getting so confused. This is Kathy, Luke's mom. My ped was looking

> through our family file a few months ago and raised his eyebrows and

> noticed that my daughter, (1st grade and healthy) had an elevated

> EOS when she had her Kindergarten entrance physical. But that was

> that. I think it was 6 or 8, around there. Also, I think it was the

> dermatologist at CMH-Chicago who told me many ezcema patients have

> elevated EOS. Why would you have to do an elemental formula? Is there

> a red flag up because she cries after she feed? Do any of you deal with

> the skin problems? Do you think EOS is directly linked with eczema?

>

> Yes, I know what you mean about the having another baby after dealing

> with this EOS stuff. I'd love a 5th child, but yikes....

> jones5 wrote:

> >

> > You know Steph, I don't think that there are a lot of people on the

list

> > who have many children after dealing with eosinophilic diseases with

one

> > child. I, of course, had to be the one. We did blood eosinophil tests

on

> > Mackenzie and it came back at 14%. The doctors are talking of a scope

and

> > starting her on an elemental formula if they come back with eosinophils

> > which they are almost positive of. Luckily though, she eats well and

> > seems to gain weight pretty well. She is up to 8lbs but cries a lot

after

> > feeds.

> > Dawn

> >

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

> > >

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

> > > Subject: 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 17, 2000

I hate to do that and we have been telling the docs that we want to wait

until she is at least 1 or 2 and see if she is still having problems then.

Reflux can cause eosinophils right? We are afraid she just has reflux and

will be misdiagnosed now. Of course we are also afraid that we are headed

down the same road we were with BJ. The only thing that the doctor said is

that we waited 12 months before our first scope on BJ and by that time, he

had scar tissue all along his esophogus. This really wasn't our choice

because then we had never even heard of a endoscopy and even then they only

went to his esophogus. Had they done a full scope they would have probably

made his diagnosis earlier than 2 and saved him a lot of hospital stays and

tests.

Dawn

----------

>

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

> Subject: Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> Date: Tuesday, January 18, 2000 6:33 PM

>

> ,

>

> 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 17, 2000

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 17, 2000

I think 24 lbs is wonderful for a 16 month old! BJ is 4 and goes between

25-30 lbs. I can understand that you hesitate to change, if you found

something that works, I would stick with it.

Dawn

----------

>

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

> Subject: Re: [eosinophilic gastroenteritis] Eosinophil Colitis

> Date: Tuesday, January 18, 2000 5:54 PM

>

> 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

Anke,

My son has Primary Eosinophilic Colitis. How was your son diagnosed? My

son is three and has many complication because of this disease. He requires

being fed via an IV and if we can through a tube that goes to his

intestines. It has gotten worse for us as he has gotten older it seems.

Tell us a little more about how you came to find out about the disease.

Breast milk versus " Real " food can be a huge difference. Some babies aren't

even diagnosed with EC until after they are done nursing. So things could

get much worse. One huge thing with EC is if when you start to feed him

solids and he vomits. Don't let them do the surgery to make him not vomit

if this starts happening, unless he has real bad reflux. I hope this makes

sense.

Love,

[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

>

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

January 18, 2000