Re: Introducing ourselves

[Guest guest]

Hi. We saw Dr. Sampson about 18 months ago. He gave AJ her diagnosis of

EG. He used tests and biopsies that were done in Philadelphia, so we didn't

do a hosptial stay. He did skin testing which was negative. Has your son

been on an elemental formula. That is what saved AJ. She is thriving on

Neocate. She was so incredibly sick and losing weight, failing to thrive,

in and out of the hosptial, when a doc said, I don't know what is wrong with

her, but let's try the Neocate. It was another 8 months before we had

gotten her diagnosis, but she would be here without it. There is others

like Vivonex and lots of people are saying great things about Elecare. AJ

willingly drinks the Neocate. It comes in 'juice boxes' and is orange. It

smells and tastes disguesting from what i have been told. Most kids are

tube fed because they refuse to drink it. It ususally takes forever to get

an appt with Sampson. I would look into an elemental formula in the

meantime. And his office didn't take our insurance either.

Phyllis--mom to

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

sensori neural hearing loss

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

peanuts, shellfish, & tree nut allergies

[Guest guest]

Hi Jacque,

Well when your doctor said you would find support in New York he didn't know about this list. You will find here so many that are facing the same problems you are. Everyone here has one of the Eosinophil diseases or a child with one. Doctors may have the medical knowledge and maybe some idea of what may help, but here you will find the support to get through on a daily basis. There are so many things that are the same and so many that are different in one way or another.

I am an Adult who has Eosinophilic Gastroenteritis. It is in my small intestine and lower stomach. Having been diagnosed as an Adult I have a little different Perspective, but I am also the mother of 4 kids so know how hard it is to have sick ones.

I had to chuckle when you said he ran away from Peas. I had finally learned to like them fresh or frozen, canned- no way, when I had a 4+ reaction to them on my scratch test. Now I don't have to eat them anymore. I take Gastrochrom, Tagamet and Allegra for my EG.

You can see we have similarities, but from your description our symptoms are very different. My disease is not as symptomatic as your sons by any means. I wish I had an explanation for that but I don't.

A lot of people on this list have seen Dr. Sampson and have wonderful reports. If even half of what I have read here is true your son will be in very good hands. Hang in there. You now have a wonderful group of people who are here to support you and on your way to a very good Doctor. I hope you can get in soon.

Judy

[Guest guest]

Jacque--

First of all, welcome. You have found the support you were looking for.

You will not find it in NYC, I am sorry to say.

Dr. sampson is one of the best in the world. He is gone a lot of the time

on speaking engagements and that is why it is so hard to get in touch with

him. One very important item you should be aware of is the new anti IgE

drugs now in clinical trials. If your son is actually skin test (or RAST

test) positive to all these foods, this drug will do WONDERS for you. It is

not clear how it will help the majority of eos disease patients who have eos

disease without clear skin or RAST test positivity to foods. Another source

for you is Dr. Metcalfe at NIH who is a world renknown specialist in Food

Allergies specifically. I find it curious that your son is so ill presently

and NOT on prednisone, though this may be in response to his immune status?

A good burst of that would help him short term at least in this acute phase.

The fever is an odd reaction, one that I have not seen in relationship to

eos disease. The lack of appetite, however, is common.

Shana on the list took her daughter to Sampson for the kind of testing you

are talking about. The frustrating thing, unfortunately, is there is no

proven link between food allergies and eos disease. You can determine what

exactly your son is allergic to, eliminate it, and it may do NOTHING for the

eos disease. By the same token, you could give your son foods he is NOT

allergic to and THEY could cause terrible EG symptoms.

Our family has eosinophilic esophagitis (me and 5 sons, 4 of which along

with myself are tube fed now) so I can't give you too many tips specifically

on eosinophilc gastroenteritis. I CAN tell you that it would be helpful to

find a GI more familiar with the disease -- There is a doctor in

Philadelphia very familiar wiht the diseases that may be of some

consultative help. There are also a couple in Cincinnati. There is one in

Pittsburgh too who is veyr knowledgeable.

Again, welcome to the group. I'm sorry you're having such a rough time of

it right now!

Harlow

[eosinophilic gastroenteritis] Introducing ourselves

>

>

>Hi everyone,

> Through a link, my family has been in contact with Lynda and Heidi and

>they have been extremely helpful and supportive. Between Lynda and Heidi

>I have not felt as alone with dealing with my son's illness as I did

>before.

> I have been monitoring the chat line, with my husband for about a week

>now and have found it instructive and confusing at the same time.

> My son's name is and he is eight years and currently weighing

>in at 42 pounds. All wheat, dairy, soy, peanut, casein, and whey has

>been removed from his diet. He has tested sensitive to all the other

>food types except green peas. He runs away when I bring out the peas!

> We live in western Maine and we are currently seeing a pediatric G.I

>in Portland, Maine with support through Dr. Grand out of Tuft's

>University in Boston. I have not met anyone else who is going through

>the same type of head banging frustrations as we are currently going

>through until this chat line. Thank you all.

> My 8 year old son was diagnosed last year with eonsinphilia

>entropathy. This was discovered through a hunch from one doctor to

>another at a " round table " conference.(At the time my son was being

>treated for failure to thrive with an endocrinologist.) At this time, my

>son's G.I has only treated one other case in our state. Through

>biopsies, we discovered a severe case of eos throughout the stomach and

>small intestine. His esophagus is clean. His doctor's concern is that

> has not responded to any medications. In fact his body has

>rejected them all. He is currently taking gastrocrome, periacton, pepcid

>plus other odds and ends.

> We were doing wonderful and up to 49 pounds this December, when he

>ended up back in the hospital with an unexplained elevated white blood

>count at 33,000 and a temp. of 106. It turned out to be strep throat and

>a reaction to wheat combination. Since that point, they discovered that

>his immune system was next to nothing and he has since then, been

>steadily losing weight. He has lost all interest in food and is in

>severe pain in the stomach area and migraines. He is suffering from

>fatigue which we have not seen at this degree since he had begun his

>restricted diet.

> Our doctor has referred Matt out to a specialist in New York City. We

>will soon be going to Mt. Sinai to meet with a Dr. Sampson. Hopefully,

>some of you have dealt with him before and can give me some advice on

>what to expect. Dr. Sampson will be doing a double blind study on Matt.

>Does anyone know how long that takes? Or any idea how long we should

>expect to be in NYC or in the hospital? Will I have access to a kitchen

>so that I can feed my son? Will it be painful for him? We have so many

>questions but Dr. Sampson's office has yet to get in touch with us to

>give us any information. On top of all of that, Sampson's office has

>refused to honor our insurance. Is this normal?

> When I questioned our G.I about another referral, one who would honor

>our insurance, he thought that Matt was at an acute stage and he wanted

>him to get some answers and not go through any unnecessary testing. (at

>one time Hopkin's was an option)

> I am sorry that this is so long winded. I have so many questions that

>no one can answer. When I asked our doctor about support for Matt and

>our family last week, his answer was that I would find my support in

>NYC. What kind of answer is that?

> My little boy is very sick and has missed the last two days of

>school. He has been running a temp. and has no appetite, again. Is this

>normal?

> Any advise or recommendations would be welcomed.

> Thank you, Jacque Fanning tjmnr@...

>

>Mom of Nick, age 10, chronic asthma, allergic to pine trees, birch

>trees, dust mites and viral; Matt, age 8, eos. entropothy, allergic to

>wheat, dairy, soy, peanut, casein and whey, sensitive to all foods

>except green peas, and , age 5, no health issues.

>

>

>

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>http://click.egroups.com/1/936/4/_/474479/_/952142765/

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

>

>

__________________________________________________

[Guest guest]

Jacque,

The only thing I wanted to add was that the Neocate has a formula for

infants. Zach has been on the Neocate since he was 8 months and cannot

tolerate the Neocate for older children so he remains on this. Zach has been

holding his weight for 6 months instead of losing. He drinks it out of a

bottle 4x a day. It has been a lifesaver.

Heidi

[Guest guest]

Fuller wrote:

>

Dear and everyone,

Thank you so much for making us feel welcomed on this site.

, Matt was found sensitive to all foods from a series of blood work

taken from him and then they somehow applied different foods to it to test

for a reaction. The reactions came back at different degrees, some showing

sensitivity and others an allergic reaction. Matt' g.i, who is a wonderful

person, immediately took him off of the dairy, soy, peanut, casein and whey.

It was not until this December when Matt lost his wheat due to a severe

reaction that landed him back in Maine Medical. We always knew that he was

borderline with the wheat because of the blood tests but his doctor wanted

to keep as much as he could in Matt's diet because of the many restrictions

already in place.

Matt's eos. was discovered right off during the biopsy to his stomach

and small intestine. The results of the biopsies proved this to be accurate.

I need to tell you that we had no idea that Matt' problem had anything to do

with diet. At 9 months he was diagnosed with renal tubular acidosis and he

had been treated for that until just a couple of years ago. The doctors

could not seem to figure Matt out. Looking back, over 's blood work

through the years, every time the eos. was very high and circled, but no one

ever picked up on it because it was always blamed on the malfunctioning

kidneys. Now I see that it was always consistent with this disease. If we

only knew more about its causes and cures. Good luck with your little one,

my heart and hope go out to you. I remember the relief that Tom and I felt

when we finally had a name for all of Matt's symptoms.

Phyllis,

I am unfamiliar with the Neocate, Vivinex and Elecare which you had

mentioned in your letter. Could I has some more info, please? Our G.I does

not want to tube feed Matt because he feels that it should be used as a last

resort. We were told that for Matt it would not be a cure for him but a band

aid that he could only use for 12 weeks. I feel that he wants us to meet

with Dr. sampson first before that step is taken. At this point, I am

willing to try anything...I feel soooo helpless. I wish that it only took a

band aid and a kiss to make everything all right.

Jacque.

Mom of Nick, age 10, chronic asthma, allergic to pine trees, birch

> trees, dust mites and viral; Matt, age 8, eos. entropothy, allergic to

> wheat, dairy, soy, peanut, casein and whey, sensitive to all foods

> except green peas, and , age 5, no health issues.

[Guest guest]

Jacque-

Like I said, AJ drinks the Neocate. I would say most kids on this list are on elemental formula diets. An Elemental formula replaces the food that your child would normally eat. TPN, where food is administered thru a central line is a last resort . Using a formula is like when a baby uses a formula, it is the child's main source of nutrition. Except in this case Neocate is formulated for older children. It is made to be broken down easily and be easy to digest. It has saved AJ and lots of kids on the list.

This is from the Mayo Clinic website--

.....also recommend a special diet. These diets are intended to correct the particular problems you may be experiencing and to help meet your specific nutrition needs. Some diets are designed to be followed for long periods of time to assist with recuperation or to maintain comfort. Other diets, however, may be prescribed for short time periods to correct acute problems or needs. Sometimes a commercially prepared nutritional formula may be recommended to make sure that your needs for protein, calories and other essential nutrients are met. At other times, vitamin and mineral supplements may be prescribed. Your health care provider should decide whether you need a special diet, a commercially prepared nutritional formula, or vitamin and mineral supplements — and for how long.

From the Ross website--

EleCare is specifically designed for children 1 year and older with one or more of the following:

problems digesting and absorbing regular foods

severe food allergies

gastrointestinal (GI) tract problems

other conditions in which an elemental (amino acid-based) diet is needed

EleCare contains all the nutrients your child needs for growth when fed in adequate amounts. The protein in EleCare is supplied by amino acids, which are easy to absorb. EleCare is very carefully manufactured and tested to ensure that it is free of intact milk protein or soy protein.

Phyllis--mom to

AJ (12/22/95) EG, GERD, Asthma, Allergies, speech delay and bilateral sensori neural hearing lossRemi (8/3/92) Spina Bifida, LATEX, avacodo, broccoli, chocolate, mushrooms, peanuts, shellfish, & tree nut allergies

[Guest guest]

Jacque,

Vivonex, Neocate and Elecare are amino acid based formulas. The complete

protein required for the reactions to occur are already broken down in this

formula. There is absolutely positively no reason a patient could not live

on this forever (we are and probably always will be). Also, the blood

testing to foods you are describing are called RAST tests (in case you

wonder in the future when referred to).. There is also NO proven link

between actual food allergies such as RAST positivity and eos in the GI

tract. All that has been proven, is that on an amino acid based diet such

as the formulas above, the eos do go away. They also go away with

prednisone. Other than that, there are no hard fast facts to deal with.

Good luck. Keep us posted on how he does. Again, in this specific

situation with all these food allergies and RAST positivity, the new anti

IgE drugs will be very helpful. Here's hoping those trials are over with

QUICKLY and the drug is fast-laned for FDA approval. It will eliminate the

food allergy reaction, but may not help the eos.

Steph

Re: [eosinophilic gastroenteritis] Introducing ourselves

>

>

>

>

> Fuller wrote:

>

>>

>

>Dear and everyone,

>

> Thank you so much for making us feel welcomed on this site.

>, Matt was found sensitive to all foods from a series of blood work

>taken from him and then they somehow applied different foods to it to test

>for a reaction. The reactions came back at different degrees, some showing

>sensitivity and others an allergic reaction. Matt' g.i, who is a wonderful

>person, immediately took him off of the dairy, soy, peanut, casein and

whey.

>It was not until this December when Matt lost his wheat due to a severe

>reaction that landed him back in Maine Medical. We always knew that he was

>borderline with the wheat because of the blood tests but his doctor wanted

>to keep as much as he could in Matt's diet because of the many restrictions

>already in place.

> Matt's eos. was discovered right off during the biopsy to his stomach

>and small intestine. The results of the biopsies proved this to be

accurate.

>I need to tell you that we had no idea that Matt' problem had anything to

do

>with diet. At 9 months he was diagnosed with renal tubular acidosis and he

>had been treated for that until just a couple of years ago. The doctors

>could not seem to figure Matt out. Looking back, over 's blood work

>through the years, every time the eos. was very high and circled, but no

one

>ever picked up on it because it was always blamed on the malfunctioning

>kidneys. Now I see that it was always consistent with this disease. If we

>only knew more about its causes and cures. Good luck with your little one,

>my heart and hope go out to you. I remember the relief that Tom and I felt

>when we finally had a name for all of Matt's symptoms.

> Phyllis,

> I am unfamiliar with the Neocate, Vivinex and Elecare which you had

>mentioned in your letter. Could I has some more info, please? Our G.I does

>not want to tube feed Matt because he feels that it should be used as a

last

>resort. We were told that for Matt it would not be a cure for him but a

band

>aid that he could only use for 12 weeks. I feel that he wants us to meet

>with Dr. sampson first before that step is taken. At this point, I am

>willing to try anything...I feel soooo helpless. I wish that it only took a

>band aid and a kiss to make everything all right.

> Jacque.

>

>Mom of Nick, age 10, chronic asthma, allergic to pine trees, birch

>> trees, dust mites and viral; Matt, age 8, eos. entropothy, allergic to

>> wheat, dairy, soy, peanut, casein and whey, sensitive to all foods

>> except green peas, and , age 5, no health issues.

>

>

>

>

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

>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>http://click.egroups.com/1/936/4/_/474479/_/952214121/

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

>

>

__________________________________________________

[Guest guest]

Jacque --

One more thing. The high eos in the blood also have no proven relationship

to the eos in the GI tract. You can have one without the other any many

times, the two do not coincide. They've been trying for years to figure out

a way to use the blood eos levels to determine what is going on in the GI

tract (as you know they have to biopsy to see that) but the blood eos levels

have not been shown reliable indicators of GI tract eos.

S.

Re: [eosinophilic gastroenteritis] Introducing ourselves

>

>

>>

>>

>>

>>

>> Fuller wrote:

>>

>>>

>>

>>Dear and everyone,

>>

>> Thank you so much for making us feel welcomed on this site.

>>, Matt was found sensitive to all foods from a series of blood work

>>taken from him and then they somehow applied different foods to it to test

>>for a reaction. The reactions came back at different degrees, some showing

>>sensitivity and others an allergic reaction. Matt' g.i, who is a wonderful

>>person, immediately took him off of the dairy, soy, peanut, casein and

>whey.

>>It was not until this December when Matt lost his wheat due to a severe

>>reaction that landed him back in Maine Medical. We always knew that he was

>>borderline with the wheat because of the blood tests but his doctor wanted

>>to keep as much as he could in Matt's diet because of the many

restrictions

>>already in place.

>> Matt's eos. was discovered right off during the biopsy to his stomach

>>and small intestine. The results of the biopsies proved this to be

>accurate.

>>I need to tell you that we had no idea that Matt' problem had anything to

>do

>>with diet. At 9 months he was diagnosed with renal tubular acidosis and he

>>had been treated for that until just a couple of years ago. The doctors

>>could not seem to figure Matt out. Looking back, over 's blood work

>>through the years, every time the eos. was very high and circled, but no

>one

>>ever picked up on it because it was always blamed on the malfunctioning

>>kidneys. Now I see that it was always consistent with this disease. If we

>>only knew more about its causes and cures. Good luck with your little one,

>>my heart and hope go out to you. I remember the relief that Tom and I felt

>>when we finally had a name for all of Matt's symptoms.

>> Phyllis,

>> I am unfamiliar with the Neocate, Vivinex and Elecare which you had

>>mentioned in your letter. Could I has some more info, please? Our G.I does

>>not want to tube feed Matt because he feels that it should be used as a

>last

>>resort. We were told that for Matt it would not be a cure for him but a

>band

>>aid that he could only use for 12 weeks. I feel that he wants us to meet

>>with Dr. sampson first before that step is taken. At this point, I am

>>willing to try anything...I feel soooo helpless. I wish that it only took

a

>>band aid and a kiss to make everything all right.

>> Jacque.

>>

>>Mom of Nick, age 10, chronic asthma, allergic to pine trees, birch

>>> trees, dust mites and viral; Matt, age 8, eos. entropothy, allergic to

>>> wheat, dairy, soy, peanut, casein and whey, sensitive to all foods

>>> except green peas, and , age 5, no health issues.

>>

>>

>>

>>

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

>>GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

>>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>>http://click.egroups.com/1/936/4/_/474479/_/952214121/

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

>>

>>

>

>

>__________________________________________________

>

[Guest guest]

Dear Jacque

Hi, welcome to the list. I was by Dr. Sampson last May for his double

blinded study. First of all you will almost not see him at all, the first

day he came in and introduced himself and his staff. I mainly dealt with his

nurse and Shideh his nutritionist she is very sweet. They give you a room we

were there from a Monday till Friday. Monday was just doing scratch tests

and the staff just taking history. The next couple days they gave both of my

kids different things which we were not able to tell what it was we never

knew if it was a food or a placebo. The first day (Tuesday)with Miriam they

gave her corn through her mouth and then the next day(Wednesday) they gave

her through her NG tube. Thursday they did a scope on her and then Thursday

afternoon Dr. Sampson sat down with us and told us that he thinks that she

can tolerate corn and rice and that it seems that she as AEG.and she is out

growing it. With Miriam she usually never reacts right away so those couple

of days they did not see any reactions, but of course as soon as I went back

home, both, she and my son started to react to what they said was ok with

them.I find they many times react after a build up.After our doctor here

told him of there reactions he then said that half the kids out grow it and

half the kids don't.

They do have a kitchen. There you could use the microwave and fridge and

hot water for coffee etc.. They will give you whatever food for your son but

not for you.

The staff was very nice but I am for warning you that when you get there ask

for explicit instructions and make sure you have them clear. When Miriam was

there after the corn trial she had some watery stools and I told him and he

got very upset with me that I didn't save them but I was not told that I had

to save them. From then on I saved them (of course after he told me to save

them she started to have normal stools for the first time in I don't know

how long) then the last day we he spoke to us he said he was finished with

his study. Then Miriam started to have watery stools again and I asked the

nurses specifically if I should save them and they said no there is no need.

When I spoke to him Friday morning before I was to leave I told him that she

started up with the diarrhea again and he yelled at me for not saving it

again(even though the nurse told me I didn't have to save it) After this

whole incident Dr.Sampson wrote all this in his medical summary to my doctor

and he wrote it in a nasty way. I was quite upset to say the least. SO just

be sure you have it very clear at all times what he wants from you and don't

rely on his nurses so you won't be embarrassed like I was when I want to

show his report to doctors here.

With your insurance I don't know but I came in from overseas with no

insurance at all, and since this was in his research clinic we didn't have

to pay anything they even had a private phone and TV in every room. If your

son gets bored which my kids did when they weren't with them You could go

to one of the play rooms upstairs in the pediatric floor.

If you have any other questions just ask, I hope I didn't turn you off. He

is known as the best in the world my doctor here now will not do a g-tube on

Miriam till he hears from Dr.Sampson what he thinks he should do steroids Vs

g-tube. Right now he is away at a conference till March 13. My mother spoke

to his private nurse who's in the middle of trying to track him down at this

conference so we don't have to wait for an answer and make Miriam suffer any

longer that she has to.

P.S. If you go send regard from the Elias's from Israel.

Shana Elias (mom to Miriam 4 EG, NG tube, Yisroel 2 possible EG, Tehilla 8

ADHD)

[Guest guest]

> Mom of Nick, age 10, chronic asthma, allergic to pine trees, birch

> trees, dust mites and viral; Matt, age 8, eos. entropothy, allergic to

> wheat, dairy, soy, peanut, casein and whey, sensitive to all foods

> except green peas, and , age 5, no health issues.

Jacque -

Hi and welcome to the list. I too am new here, I'm actually gathering

info on EE/EG/EC, because my son (who is 13 months) has yet to be

diagnosed, but has definite problems with all foods except bananas and

sweet potatoes.

So my question for you is this, how did you come to the conclusion that

Matt is sensitive to everything except green peas? Have you had any

tests that indicate that? Like I mentioned, my son seems sensitive to

most everything too, though all tests come out fine. It seems bizarre

that soooo many foods can cause problems, and like your son running from

peas, my son now sees bananas and sweet potatoes and immediately throws

them at the wall. Honestly I can't say I blame him!

But I am wondering how you came to that conclusion, as no dr. we've seen

seems willing to acknowledge that this is the case with my son.

I hope you find some much-deserved support on this list - so far

everyone seems so wonderful.