(No subject)

[Guest guest]

Tina-

You can find rice milk at a lot of supermarkets these days. Also, if there

is a whole foods near you, they carry it, or any health food store. Dr.

Sampson, the allergist that a lot of kids have seen in New York City, says

to only use Rice Dream brand. It is run on safe, clean equipment.

If your doc doubts the Neocate safeness, as I did, have him call or email

the company. I did. They came right out and told me, it is not for kids

with allergies.

I told you, my friend lives in Plano. She has given me two phone numbers

that are help lines. One is , the other is . Maybe

they can help you find a doc.

Phyllis--mom to

AJ (12/22/95) EG, GERD, Asthma, Allergies, Speech delay and hearing loss

Remi (8/3/92) Spina Bifida, LATEX, peanuts, shellfish, nut & avocado

allergies

[Guest guest]

Tina,

You are RIGHT about the Neocate juice boxes This information was even

released at the allergy conference a few months ago. If your doc is

questioning it, have him contact Dr. Sampson, who is a nationally

reknown allergist in this field.

steph

[Guest guest]

Phyllis,

YouR FRIEND LIVES IN PLANO?

PLANO TEXAS?

my husband and I grew up there!

No way.

steph

[Guest guest]

I agree. What kind of life does BJ have when he is in pain every day, all the

time? The prednisone gives him a pretty painless exsistence and he is a happy

kid on it. If it shortens his life, then I will say that the time he was alive

was a happy time, not spent doubled over constantly.

Dawn

timandtina@... wrote:

> From: timandtina@...

>

> Hi this is response to Patti, Patti I completely agree with you. But what do

you do as parents who have a sick child and when you tell a dr this and that and

they really get mad and basicly tell I am the dr and I know what i am doing you

are a parent who can only see one side to this type of treatment. Right know I

am going through this with Alyssa's dr. I have brought up alot of meds and even

formulas. He wants to put Alyssa on neocate one in the juice box and I repeated

what i had found out about the traces of milk found in the formula and he said

that that it is impossible they couldn't put it on the market with this in it

but Im like hey it is there and i will not risk her getting sick over this.

After the mix up with the subdue I am afraid to try anything he is suggesting

now he said okay we will try the rice milk but I can't find it here. so do we

risk tring to find another dr who doesn't know enough or will try other things

and then Alyssa will get worse or put her through everything all over again just

to come up with the same treatment? Maybe where you are you have a lot of drs

but here there is not that many or there maynot be that many treatments that are

" deemed safe " On the note of prednisone It has been a life safer for Alyssa

even though she still has bad days it is so much better then it was before. You

basiclly have to weigh the pros and cons. either they get better and it masks

the symtoms or it doen't. Alyssa would not be here today if we had not tried

this that is not our words but the words of ALL her drs. it is possible to have

some damage from this but at the same time your child can have damage from this

diease. as for the gastrocrom I can not say for sure that it has helped but I

can't disprove that it hasn't either maybe its a combo of all the meds. This is

probley coming out wrong but the way I took your post was that prednisone was

taboo but for a lot of kids that is the only treatment that will and has helped

save their life. If you find another treatment with out all the side effects

that works PLEASE let us know

> Tina

>

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

> Have you entered ONElist's " Grow to Give " program?

> http://www.onelist.com

> Deadline is June 19. Join now to win $5000 for your charity of choice.

[Guest guest]

I was just wondering about allergy conferences? Is there a list somewhere

of these dates & places where they are held?

Thanks in advance,

Take Care U,

in Iowa

(Camp878904)

[Guest guest]

I was just wondering about allergy conferences? Is there a list somewhere

of these dates & places where they are held?

Thanks in advance,

Take Care U,

in Iowa

(Camp878904)

[Guest guest]

I was just wondering about allergy conferences? Is there a list somewhere

of these dates & places where they are held?

Thanks in advance,

Take Care U,

in Iowa

(Camp878904)

[Guest guest]

In a message dated 6/15/99, 1:49:31 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<>

I went to the Food Allergy Network conference in April. You can visit their

website at www.foodallergy.org to get information on any other conferences

scheduled for 1999. I believe there may only be one more conference this

year.

Jen

( 11/7/95 EE, food allergies, asthma)

[Guest guest]

In a message dated 6/15/99, 1:49:31 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<>

I went to the Food Allergy Network conference in April. You can visit their

website at www.foodallergy.org to get information on any other conferences

scheduled for 1999. I believe there may only be one more conference this

year.

Jen

( 11/7/95 EE, food allergies, asthma)

[Guest guest]

In a message dated 6/15/99, 1:49:31 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<>

I went to the Food Allergy Network conference in April. You can visit their

website at www.foodallergy.org to get information on any other conferences

scheduled for 1999. I believe there may only be one more conference this

year.

Jen

( 11/7/95 EE, food allergies, asthma)

[Guest guest]

Be careful if you try Mannatech. I looked into Mannatech and their products

contain caffeine. If the products work for you, then by all means go for

it, just urging caution...

-Joy

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

[Guest guest]

Joy,

Thanks for your info. I will do some further checking into the caffeine.

Take Care U,

in Iowa

(Camp878904)

[Guest guest]

Sharon, does the same thing as Clayton even after his reflux surgery.

It was awful before they did his second reflux surgery. He would eat & just

start pointing at his chest area. As for Clayton's eating habits, our GI &

ped told us to break all the rules w/ as far as making eating fun.

They said let him eat walking around the house, let him eat while watching

t.v., etc, just whatever it took. will eat about 1-2 ozs of baby

food once a day & will snack on marshmallows from the cereal once a day.

His test is on tuesday so pray that we will get some answers. I haven't had

much luck getting different foods down him to get a reaction. The GI

advised me to " go for broke " so that if the does has eos stuff (don't you

just love how I can't spell it) it will show up. Anyhow, good luck w/

Clayton. How old is he? Does he have reflux also?

[eosinophilic gastroenteritis] (no subject)

>From: SDidinsky@...

>

>Hi all:

>

>Clayton has basically reverted to not eating much. Breakfast he is OK with,

>fruit and applesauce and organic puffed rice. But for the past 2 weeks it

has

>been a real struggle to get him to eat lunch and dinner. He screams and

cries

>and refuses to eat. Granted he is still basically tube fed - about 300-400

>calories by mouth, but this is really concerning us. It seems like all his

>bas behaviors are coming back. I am going to call the GI Monday. (I knew

if

>was getting worse when my hubby mentioned something to me about it). I

wonder

>if the food is hurting his tummy. Clayton keeps pointing to his tummy and

it

>sounds like he is trying to say " it hur " . It is driving me crazy. I think

>something may be brewing. I guess I will be off to see Dr. (the GI)

>this week.

>

>Love,

>Sharon

>

>

[Guest guest]

Rhonda:

Clayton has the Nissen (reflux surgery) in August of 1998 and also spent 9

weeks at KKI this spring and summer learning to eat. It is a still a

struggle. I will be calling Dr. tomorrow to arrange to have him scoped

he has not been scoped since last December.

Thanks for the support.

Love,

Sharon

[Guest guest]

In a message dated 9/26/99 8:27:58 AM Eastern Daylight Time,

transcription@... writes:

<<

Hope this resolves quickly. We have learned that when our kids started

refusing food or complaining of GI distress, it always meant the eos were

back -- Hope this isnt the case with yours.

>>

This is my concern and my husband thus the call to Dr. tomorrow to get

the scope done now rather than waiting until November. I know something is

up. He is refusing to eat breakfast today too.

Sharon

[Guest guest]

Sharon,

Hope this resolves quickly. We have learned that when our kids started

refusing food or complaining of GI distress, it always meant the eos were

back -- Hope this isnt the case with yours.

Steph

[eosinophilic gastroenteritis] (no subject)

>From: SDidinsky@...

>

>Hi all:

>

>Clayton has basically reverted to not eating much. Breakfast he is OK with,

>fruit and applesauce and organic puffed rice. But for the past 2 weeks it

has

>been a real struggle to get him to eat lunch and dinner. He screams and

cries

>and refuses to eat. Granted he is still basically tube fed - about 300-400

>calories by mouth, but this is really concerning us. It seems like all his

>bas behaviors are coming back. I am going to call the GI Monday. (I knew

if

>was getting worse when my hubby mentioned something to me about it). I

wonder

>if the food is hurting his tummy. Clayton keeps pointing to his tummy and

it

>sounds like he is trying to say " it hur " . It is driving me crazy. I think

>something may be brewing. I guess I will be off to see Dr. (the GI)

>this week.

>

>Love,

>Sharon

>

>

[Guest guest]

rhonda --

So walker is having an EGD on Tue? Are they thinking about eos esophagitis,

or eos gastroenteritis (or both?)

I ask because an elemental diet has shown to eliminate eos esophagitis...

and also because your son had TWO reflux surgeries (we discovered Kody's IEE

after his postop esophageal biopsies actually showed more inflammation than

preop)

Three of us had problems with Neocate and are better with Vivonex (different

types of Vivonex that is,, they have several).

Unfortunately, as time has passed, we have come to the conclusion that the

only way to be totally free of symptoms is to completely avoid all food

proteins for everyone with the exception of ONE child who is okay with

chicken.

Good luck on Tue and keep us updated. It always takes us a couple of days

to get the bx reports back.

(eos esophagitis/GT, former TPNr)

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

[eosinophilic gastroenteritis] (no subject)

>

>

>>From: SDidinsky@...

>>

>>Hi all:

>>

>>Clayton has basically reverted to not eating much. Breakfast he is OK

with,

>>fruit and applesauce and organic puffed rice. But for the past 2 weeks it

>has

>>been a real struggle to get him to eat lunch and dinner. He screams and

>cries

>>and refuses to eat. Granted he is still basically tube fed - about 300-400

>>calories by mouth, but this is really concerning us. It seems like all his

>>bas behaviors are coming back. I am going to call the GI Monday. (I knew

>if

>>was getting worse when my hubby mentioned something to me about it). I

>wonder

>>if the food is hurting his tummy. Clayton keeps pointing to his tummy and

>it

>>sounds like he is trying to say " it hur " . It is driving me crazy. I think

>>something may be brewing. I guess I will be off to see Dr. (the GI)

>>this week.

>>

>>Love,

>>Sharon

>>

>>

>

>

[Guest guest]

Sharon,

This is the biggest issue we have with Kody, too. How do we know that the

eating refusal is not an indication of eosinophilic disease and if so, is it

not better to just accept that he may not ever be able to eat p.o.?

we have let him go without a tube (kody is TPN dependent) since his

life-threatining GI bleed a few months ago. He has taken very little by

mouth even with some encouragement to take " safe " foods. The doc is now

ready to place a G and a J tube and try to get some elemental formula in,

even though we may not be able to get much in due to his pseudo-obstruction.

I really wonder if any of it is worth putting him through. I think he

doesn't eat because he simply cannot. I've seen each kid go through this at

different levels and really wonder if just giving up on eating is not the

least of the two evils. on the flip side with Kody, however, the doc feels

we have to try the tube feeds just one more time, as TPN, eventually, is a

terminal treatment for children.

Let me know what KK has to say about this. I've always been in favor of

scoping me and the kids so better explain and figure out the disease

process, but there are times when simply stopping the food or giving short

course of prednisone will stop the symptoms. We also should return to KK

soon, I'd like to know his thoughts on my allergy to Vivonex Plus!

(eos esophagitis/GT, former TPNr)

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

Re: [eosinophilic gastroenteritis] (no subject)

>From: SDidinsky@...

>

>Rhonda:

>

>Clayton has the Nissen (reflux surgery) in August of 1998 and also spent 9

>weeks at KKI this spring and summer learning to eat. It is a still a

>struggle. I will be calling Dr. tomorrow to arrange to have him

scoped

>he has not been scoped since last December.

>

>Thanks for the support.

>

>Love,

>Sharon

>

>

[Guest guest]

, the redness in his esophagus has cleared since his reflux surgery

on 8/10. They are checking for eos gastroenteritis. After his surgery he

didn't have any blood showing up on the chem strips that we check his ph

level with. Then after we started trying to feed him po again he started

showing large amounts of blood. The GI doc told me to " go for broke & feed

him anything that I can manage to get down him " so if he does have eos it

will be sure to show up. How long does it take for the eos to show up in

the biopsy after he eats the food? We know for sure that he is allergic to

milk because his stoma turned blood red & oozy when he had just 4-5 sips of

whole milk. I know this sounds awful but I gave it to him a second time on

a different day & got the same results. It gets so frustrating not knowing

what is going on w/ my son. I just want some type of definative answer.

What is IEE? Is reflux a major symptom of this eos stuff? Sorry such a

long message, I'm just trying so hard to understand everything. Thank you

for your help, Rhonda, mom to 2, gerd & dysmotility, & Haven 5

[eosinophilic gastroenteritis] (no subject)

>>

>>

>>>From: SDidinsky@...

>>>

>>>Hi all:

>>>

>>>Clayton has basically reverted to not eating much. Breakfast he is OK

>with,

>>>fruit and applesauce and organic puffed rice. But for the past 2 weeks it

>>has

>>>been a real struggle to get him to eat lunch and dinner. He screams and

>>cries

>>>and refuses to eat. Granted he is still basically tube fed - about

300-400

>>>calories by mouth, but this is really concerning us. It seems like all

his

>>>bas behaviors are coming back. I am going to call the GI Monday. (I knew

>>if

>>>was getting worse when my hubby mentioned something to me about it). I

>>wonder

>>>if the food is hurting his tummy. Clayton keeps pointing to his tummy and

>>it

>>>sounds like he is trying to say " it hur " . It is driving me crazy. I think

>>>something may be brewing. I guess I will be off to see Dr. (the

GI)

>>>this week.

>>>

>>>Love,

>>>Sharon

>>>

>>>

>>

>>

>

>

[Guest guest]

hello this is Tina mom to Alyssa. I was wanting to find out if any of the

kids have reactions to the tape (ng tube) We had taped Alyssa's tube to he

back and it looks horrible. It almost looks like she has been burnt. I feel

terrible about this. The GI doc said to put neosporin on it so it dries

up.but she still says it hurts. any ideas? Also how long should we wait for

the formula to start helping via ng tube before we request g tube? she has

had it a month and she is still not able to handle a lot of her safe food?

she could have chicken and now it makes her sick? same with pasta. she is

only hooked up anight and she eats during the day of course it is only chips.

she has lost some weight not enough to " worry about " yet. and how do we

handle the fact her drs don't agree on any thing. the allergist wants to do

one thing and then the GI doesnt think it is it severe enough and the ped

doesn't have a clue so what do we do? Thanks Tina mom to ALyssa EE, EG,

Reflux, Asmtha, a lot of allergies,

[Guest guest]

In a message dated 9/25/99 8:01:52 PM Pacific Daylight Time,

SDidinsky@... writes:

<< Clayton keeps pointing to his tummy and it

sounds like he is trying to say " it hur " . It is driving me crazy. I think

something may be brewing. I guess I will be off to see Dr. (the GI)

this week.

>>

Sharon,

do you think his body is isn't ready for more food yet? Or maybe he is not

used to a full belly feeling and the tube feeds along with food by mouth is

more than his belly can handle? We will keep him in our prayers. I hope Dr.

has some answers for you.

Cathy

[Guest guest]

In a message dated 9/26/99 6:01:47 AM Pacific Daylight Time,

SDidinsky@... writes:

<<

This is my concern and my husband thus the call to Dr. tomorrow to get

the scope done now rather than waiting until November. I know something is

up. He is refusing to eat breakfast today too.

>>

Sharon,

another thought, could he be teething??? or coming down with a cold?

Cathy

[Guest guest]

In a message dated 9/27/99, 1:41:18 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<< I was wanting to find out if any of the

kids have reactions to the tape (ng tube) We had taped Alyssa's tube to he

back and it looks horrible.>>

When had his ng tube we used Duoderm to tape it to his face. It

stayed secure much longer for us than the regular white tape they gave us at

the hospital. We did not tape it directly to his back. I used to always

keep an undershirt on him and tape the tube to the undershirt.

Jen

( 11/7/95, EE, food allergies, asthma)

[Guest guest]

In a message dated 09/27/1999 5:41:14 PM !!!First Boot!!!,

Timmyandtina@... writes:

<< I was wanting to find out if any of the

kids have reactions to the tape (ng tube) We had taped Alyssa's tube to he

back and it looks horrible. It almost looks like she has been burnt. >>

Hi Tina

Connor had a terrible time with the tape, the thing that worked the best was

Duo Derm we got it from the homecare company that delivered all of his stuff.

I would cut a piece to cover his cheek then run the NG tube over that and

tape only on the duo derm.

let me know if you need more info let me know

Connie

[Guest guest]

Are you using Duoderm and Tegaderm?? They saved BJ's skin during tube

feedings.

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

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

December 24)

Re: [eosinophilic gastroenteritis] (no subject)

> From: Timmyandtina@...

>

> hello this is Tina mom to Alyssa. I was wanting to find out if any of the

> kids have reactions to the tape (ng tube) We had taped Alyssa's tube to he

> back and it looks horrible. It almost looks like she has been burnt. I

feel

> terrible about this. The GI doc said to put neosporin on it so it dries

> up.but she still says it hurts. any ideas? Also how long should we wait

for

> the formula to start helping via ng tube before we request g tube? she

has

> had it a month and she is still not able to handle a lot of her safe

food?

> she could have chicken and now it makes her sick? same with pasta. she is

> only hooked up anight and she eats during the day of course it is only

chips.

> she has lost some weight not enough to " worry about " yet. and how do we

> handle the fact her drs don't agree on any thing. the allergist wants to

do

> one thing and then the GI doesnt think it is it severe enough and the ped

> doesn't have a clue so what do we do? Thanks Tina mom to ALyssa EE, EG,

> Reflux, Asmtha, a lot of allergies,

>

>