(No subject)

[Guest guest]

had an endoscopy which is when they put them to sleep and put a tiny

camera down in their tummy, and they take biopsies. They test for

eosinophils in those biopsies but our GI doc says there are other signs too

such as irritation and swelling.

Dawn

[Guest guest]

In a message dated 98-06-04 13:54:29 EDT, you write:

<< Tyler has

" reflux " , & he can gag & bring up phlegm if he hasn't been fed for a

couple of hours. >>

Before was treated for Eosinophilic esophagitis he used to vomit

often. Many times he would throw up mucus that was the consistency of egg

whites. The doctor told me that this was not uncommon in these kids. He

still vomits mucus occasionally when he is having a bad asthma attack.

[Guest guest]

In a message dated 98-06-04 13:54:29 EDT, you write:

<< Has

anyone else experienced weight loss when using an elemental formula...we

are using Vivonex. >>

CClayton did not due well orginally on the Neocate Infant Formula. He was up

to ove 2000 calories a day and gained less than 1/2 a pound in more than 3

months. He justed seemed unable to absorb the Neocate Infant Formula. We

swiched him the the Neocate 1+ and he seems to be gaining better.

Sharon

[Guest guest]

How do they treat eos... sorry I can't spell it? That sounds like

Tyler.

Thanks

Glenda

[Guest guest]

In a message dated 98-06-05 12:08:49 EDT, you write:

<< How do they treat eos... sorry I can't spell it? That sounds like

Tyler. >>

Hi Glenda,

I think each of us can probably tell something different about treatment.

There are many different thoughts on treatment.

We first tried treating with oral steriods. This was not successful

for us. Our next step was to take off of all food and give him

Neocate 1+ through a feeding tube. I begged the doc to let him have something

to eat and they let us feed him corn and apples in addition to the tube

feeding. After several weeks we were allowed to start reintroducing food.

One new food every four days. If he reacts to a food we remove it from his

diet. We have been going through the food challenge for months but it has

been worth it. no longer has a feeding tube and can eat a decent

amount of food. is restricted from eating any milk, eggs or nuts. We

also stay away from citrus because he has had some bad reactions to it.

Jen

[Guest guest]

As I sit here and read all these stories about everyone's little boys--,

Clayton, Jen's son, Dawn's son, and all you have gone through with G-tubes,

elemental formulas, recurrent hospitalizations, developmental delays etc. I

just think it is time for me to send you a few cyber-hugs because I know from

all we have gone through with Matt that nobody really understands the worry

and stress and concern one has for their own child except the parents

themselves and those who are going through similar situations with their own

children. I don't know how many of you have sturdy support systems but I have

found myself somewhat isolated many times because everyone around me has

normal, healthy kids and doesn't understand what is like to be a parent of a

kid with chronic health problems.

Even for those of you that have supportive husbands, as the Moms I figure we

carry most of the burden for ensuring our child's health and being diligent

about the special care and needs they have.

HUGS! And thanks, Sharon, for getting this list together. I think we all can

use an understanding ear even if it is by e-mail!

Lynda

[Guest guest]

In a message dated 98-08-01 22:45:16 EDT, you write:

<< Dr. Semaeo at St. is doing the endoscopy/colonoscopy. >>

He is supposed to be very good. He was going to do Claytons most recent

endocscopy but Dr. ended up doing it. Keepp us posted and good luck.

love,

sharon

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

refluxer) and Clayton(3/30/97) (eosinophil gastroenteritis, mild developmental

delays, food allergies (milk, soy, egg, wheat) Nissen and g-tube scheduled

8/14/97)

[Guest guest]

At 11:45 AM 8/2/98 EDT, you wrote:

>

<< Dr. Semaeo at St. is doing the endoscopy/colonoscopy. >>

>

>He is supposed to be very good. He was going to do Claytons most recent

>endocscopy but Dr. ended up doing it. Keepp us posted and good luck.

He did AJ's first one too. Both times, his and our schedule worked out

better than with Dr. . We were happy with him. I will keep you posted.

Phyllis

[Guest guest]

In a message dated 98-08-12 20:52:14 EDT, you write:

<<

Good luck to all with procedures this week. >>

And good luck to you with all that is going on in your house. Glad

to here about Kody but sorry about the other 2. Here is a big hug

(((((((((((((HUG)))))))))))

love,

sharon

mommy to Jake (5)-nda, and fraternal 34.5 week twins Cole (3/30/97) - nda

(reformed refluxer) and Clayton(3/30/97) (eosinophil gastroenteritis, mild

developmental delays, food allergies (milk, soy, egg, wheat) Nissen and g-tube

scheduled 8/14/97)

[Guest guest]

In a message dated 8/13/98, 8:45:13 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

< >

,

Have any of your kids had a Bone DEXA scan. Our GI recommended one for

. We had it done a few months ago. For anyone who doesn't know what

this is (Ididn't until had one), It does a full body scan for bone

densisty. It is commonly used for women for checking osteoperosis (sp?). It

was a quick non-invasive test. Because it requires that they lie still for a

few minutes he was sedated during the test.

Jen

( 11/7/95, eosinophilic esophagitis, food allergies, asthma)

[Guest guest]

>

> ON a sadder note, our oldest has been more symptomatic this week than

> ever in 11 years..we are upping his prednisone dose.

>

So sorry to hear this, I hope things start to look up soon for him!

> Our second broke his hand in a freak soccer accident in the front yard,

> though the GI does not think it is related to bone loss from the

> prednisone????

>

Do you doubt this? I think I do? How long has he been on prednisone? Our

GI keeps telling us is on a low dose and low doses really aren't that

dangerous. takes 12 mg a day and I know some adults that take 5mg so

I just don't buy it.

Dawn

[Guest guest]

>

> Today, Arissa is handing us food and saying she is allergic to it as she

> drools when it passes before her eyes. It is for her own good, but still

> so hard to watch.

>

does the same thing like when we are at a grocery store and they have

samples. He tells them, " I can't have that, it hurts my tummy " . It is

pretty good but still sad to be so smart about it at 2.

> I have thought about tube feeding and the same thing. Wish it had been

an

> option earlier, not when she alreadys knows about eating. We had to cath

> Remi to give her kidneys relief. Cathing never worked for us, for exactly

> that reason. She was already semi potty trained and knew what she was

> supposed to be doing.

>

We went through a bunch of horrible tests with a lot of cathing with Dakota

when they thought something was wrong with her liver and kidneys. Thank

goodness there was nothing wrong. Does the Spinal Bifida affect Remi's

kidneys?

Dawn

[Guest guest]

> does the same thing like when we are at a grocery store and they have

>samples. He tells them, " I can't have that, it hurts my tummy " . It is

>pretty good but still sad to be so smart about it at 2.

They know how to break your heart!! Tonight, Arissa gave me a scare. She

told me her belly hurt. She is only eating rice. Will we have to see. I

hope we get some answers tomorrow and not have to wait until after the

weekend. Now I am always going to wonder if there is dairy in a product!

>We went through a bunch of horrible tests with a lot of cathing with dakota

>when they thought something was wrong with her liver and kidneys. Thank

>goodness there was nothing wrong. Does the spinal bifida affect remi's

>kidneys?

Cathing wasn't successful because she knew she should be potty training and

we ended up doing an operation. Her kidneys weren't working because her

spinal cord had teathered (gotten tied in a knot) again. So in the end, it

was good that we couldn't cath her. She has a watch that goes off every

two hours and as long as she goes when it rings, she is fine. But she can

go all night without waking and is fine. It just took a long time to get

this far. She wasn't trained until she was almost 5 1/2. Now, her whole

class says-remi, time to go to the bathroom whenever anything rings. It is

a big joke. She takes it all in stride. They will keep testing her every

year though. Those cathing tests are horrible.

They saw kidney problems with Arissa on the ultrasound or they thought they

did. They did ultrasounds every week or almost. At the begining because of

past miscarriages and the SB and then with Arissa's kidneys. By the time,

she was born, they were okay and she has been toilet trained since she was

17 months old. She wanted to run around naked all the time. I said fine,

as long as you go on the potty. She does and still would rather be naked.

Phyllis

[Guest guest]

> They saw kidney problems with Arissa on the ultrasound or they thought

they

> did. They did ultrasounds every week or almost. At the begining because

of

> past miscarriages and the SB and then with Arissa's kidneys. By the

time,

> she was born, they were okay and she has been toilet trained since she

was

> 17 months old. She wanted to run around naked all the time. I said

fine,

> as long as you go on the potty. She does and still would rather be

naked.

> Phyllis

>

Does Arissa or anyone else have bowel problems? has such severe

diarrhea and such irritation that I told the GI I can't get him to potty

#2, it almost seems as though he doesn't have control and he said that with

a lot of irritation that doesn't surprise him.

Dawn

[Guest guest]

In a message dated 98-08-13 22:07:29 EDT, you write:

<< Does anyone have Dr s Email address? >>

Ste[hanie:

I do not but I will ask him for it today if I remember.

love,

sharon

[Guest guest]

Does Arissa or anyone else have bowel problems?

She did about 8 months ago. She could have sat on the potty all day

because of the non-stop diarehha. When this was going on, she was in

diapers again. But then she was hospitalized, put on IV and i guess, it

was what has been referred to as stomach rest and it stopped. But that was

also the point where she went on Neocate and almost all foods were

eliminated.

Now it only happens with antibiotics and i get so scared we aren't going to

be able to stop it.

Phyllis-mom to

Arissa (12/22/95) EG, multiple food allergies, occasional asthma

Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and

latex

[Guest guest]

In a message dated 8/13/98 10:34:26 PM Central Daylight Time,

j7160@... writes:

<< Does Arissa or anyone else have bowel problems? >>

has hirschprungs now repaired but he has diahrea constantly now I dont

know if this is form the hirschprungssince a good percentage of his lg

intestines had to be removed which would make sence or if it is something else

.. take care

angela and the munchkins

[Guest guest]

In a message dated 8/26/98, 12:01:27 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<

>

You were right by my house. I am just a few minutes from Rices. Next time

you are in the area let me know.

Jen

[Guest guest]

In a message dated 98-08-26 00:01:33 EDT, you write:

<< Am I correct in saying that Arissa is the only girl on this list with EG?

I hope this is not her idea of how to meet boys!! >>

From what I understand EG effects many more boys than girls.

love,

sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

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

possible latex allergy, some dd and undiagnosed neuro issues)

[Guest guest]

Phyllis,

As a matter of fact, over 95% of the kids with EE/EG are boys

I am a girl, however, and Have EE

SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

In a message dated 8/26/98 7:41:45 AM Central Daylight Time,

SJHarlow@... writes:

<< I am a girl, however, and Have EE >>

What is EE?

Jane

15 mo

2 1/2

[Guest guest]

Phyllis,

I asked our pharmacist again today and he said the side effects of

Gastrocrom are nausea, trouble sleeping, and a bad taste in the mouth. He

also said these side effects are rare and even when they do happen go away

with continued treatment.

Dawn, mommy to Dakota, 6(in 1st grade, only a few more years before the

boys are pounding down the doors) and , 2-1/2 (eosinophilic

gastroenteritis, fundo 10/96)

..

[Guest guest]

In a message dated 98-09-12 20:41:56 EDT, you write:

<<

AJ was given Duphalac this time. She started it and no hives as of yet.

She went to the bathroom also. So far so good. >>

This is what generic Clayton has been taking for so long with no problems. I

think that it is just the brand name for lactalose - so maybe not really a

generic. Like radine -is zantac.

We see Dr. Sampson on Friday so wish me luck.

love,

sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

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

possible latex allergy, some dd and undiagnosed neuro issues)

[Guest guest]

Hi everyone;

Our names are Mark and Beatrix and we have five children all boys from ages

sixteen to five. our youngest was born with Hirschsprung disease.

In his case, its a very severe case and he has only 80cm of small

intestines left. We have had so many surgeries due to obstruction, we

stopped counting. He is also on full TPN and has a g tube to replace

jejunostomy losses from lack of absorption. About two years ago he

developed bleeding in his bowel and for months we didn't know what was

causing it. They diagnosed esiophilic gastroenteritis and put him on

Ketotifen. its been keeping it under control and as long we keep him on it

we hope we will be okay.

Since his last surgery in august this year he has been obstructing several

times a day and we have to foley him to keep him stable. He also is not

allowed to eat. Something that he enjoys and misses terrible. He is

scheduled for a scope and dilatation again next friday where they will once

again do biopsies too. If this won't clear his problem we will be back to

the OR. We are hoping that this will not be the case, since we cannot

afford to lose any more bowel. Hope to meat everyone in the group and if I

can help Please ask

Beatrix and Mark

[Guest guest]

Mark and Beatrix,

I just wanted to welcome you and your family. I dont post much but I am Glad

you have found your waty to the list. My name is angela and I also have 5

Children (2 girls and 3 boys) my youngest of which also has Hirschprungs along

with a large list of other complications. I found it odd that your son also

was your 5th boy as hirschprungs usually effects the first born son according

to statistics. so I was wondering did any of your other boys have any problems

with there gut? Mine did not other than reflux due to prematurity. I guess the

statistics arent always right huh?has gone through all of his surgeries

for his Hirschprungs. so now if we can just figure what the rest of his

Problems are and solve them it would be great if you get a chance Email me

privately at icey5309@... I would love to talk to you further on your

experience with all of this as we really arent sure what all is going on with

and are having alot of problems. Thought maybe we could compare some

notes and see what you think.

Also thanks soo much for DR Putnams Email adress we have been emailing

back and forth he seems to be a very knowledgeable DR. and he has alot of

Ideas as to what might be going on. unfortunately TX medicaid wont pay for the

visit to go see him or any DR out of stats unless it is an emergency and a

life or death situation ( now it seems to me not wanting to breath would

be considered as such but hey what do I know) DR Putnam has really been great

though and he is willing to Consult with other DR's in TX now if I could just

find a DR that is willing to do the same maybe we will eventually have some

answers.

Thank you all this is a wonderfull List!!

Take Care

Wishing you all Luck!!

and the 4 munchkins and 1 little puky ,poopy smurf