GI's big answers

August 6, 1998

Well everyone, our GI doc called back. He wanted me to throw in the

car and admit him. has been in the hospital a total of 22 times. We

are trying very hard to keep him out as much as we can. I asked him what

he planned to do at the hospital. The nurse said bowel rest. I asked her

how she thought this would solve 's problems long term. She said it

wouldn't solve any problems long term but short term might make him feel

better for a little while. I told her that I did not want any more short

term solutions, that I want to know how to make better. She said

maybe you should seek a 2nd opinion, DUH! She is going to talk to the GI

and see who he recommends because I told her I think we want to see someone

who specializes in EG.

Dawn, mommy to Dakota(just a cutie-patootie) and (EG and fundo 10/96

and hoping there is light at the end of this dark tunnel)

August 6, 1998

In a message dated 98-08-06 15:48:23 EDT, you write:

<< She said

maybe you should seek a 2nd opinion, DUH! She is going to talk to the GI

and see who he recommends because I told her I think we want to see someone

who specializes in EG. >>

Dawn:

I hope you and get some relief. It is horrible to watch our kids suffer.

Please keep us posted on what is happeneing with . I hope that he does

not have to be admitted again.

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)

August 6, 1998

Big time warning..... A past doc of ours wanted to do this to Spencer and

put him on only TPN. Without anything going into the gut your liver can

die. And it can die fast. Doc's out here tell me that they always have

something going into the gut. At least a few oz's or so a day so that the

Liver can produce bial. This is definate short term fix and may cause long

term effects. I would seek out a second opinion quick. I would ask them

to put in an ng tube and drip in at a very slow rate something like Neocate

and Vivonex formula. It is absolutely unheard of to be allergic to these

formulas. If you do end up showing eos's anywhere your child probably has

Primary Eos Gasttritis or Esophigitis or Colitis. This is the disease and

the Eos will not go away if you eliminate all foods. My son had

Eosinophilic esophigitis/gastritis and colitis. The esophigitis/gastritis

mostly went away with the elemental formula but the colitis was out of

control. Am I making any sense?? I am just very scared for you and your

child and how there are some stupid doc's out there. Write if I can be of

any help. Believe me, I am and was going through all of this as we speak.

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>

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

> Subject: [eosinophilic gastroenteritis] GI's big answers

> Date: Thursday, August 06, 1998 3:36 PM

>

> Well everyone, our GI doc called back. He wanted me to throw in

the

> car and admit him. has been in the hospital a total of 22 times.

We

> are trying very hard to keep him out as much as we can. I asked him what

> he planned to do at the hospital. The nurse said bowel rest. I asked

her

> how she thought this would solve 's problems long term. She said it

> wouldn't solve any problems long term but short term might make him feel

> better for a little while. I told her that I did not want any more short

> term solutions, that I want to know how to make better. She said

> maybe you should seek a 2nd opinion, DUH! She is going to talk to the GI

> and see who he recommends because I told her I think we want to see

someone

> who specializes in EG.

> Dawn, mommy to Dakota(just a cutie-patootie) and (EG and fundo 10/96

> and hoping there is light at the end of this dark tunnel)

>

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

>

August 6, 1998

They have put in the hospital countless (10-12 times) and given him

this bowel rest as they call it. Where they put in an IV and give his

tummy a few days to heal but you are right this is very short term.

was back to square one in a week or two, back with a very irritated tummy.

This is just not cutting it anymore and the GI knows it. He said to me

today, it seemed that took 1 step forward and 2 back. We have an

appt to see this Dr. Vanderhoof in Omaha August 18th. Ideally, he will

turn out great since he is only 4 hours away and it possible to follow with

him on a semi-regular basis. I am going to call tomorrow and ask what his

plans for are.

was on a ng tube this year for 4 months and did wonderful, never

complained of pain. Ideally, we would be able to let him eat without a

tube. I don't know, maybe we can't. That is one of my reasons for seeing

another doc. Our GI doc has not mentioned going back to the tube and

truthfully, we really don't want to go back to the tube but if it makes the

pain and irritation go away, then maybe that is what has to be done.

has never had an eos free biopsy.

If you do end up showing eos's anywhere your child probably has

Primary Eos Gasttritis or Esophigitis or Colitis. This is the disease and

the Eos will not go away if you eliminate all foods.

What is Colitis? Symptoms?

Thanks

Dawn

August 6, 1998

Colitis is severe swelling of the large bowel. Symptoms of Colitis are

projectile vomiting and or retching if you have the fundo and tons of

diarrhea along with terrible belly aches. I would recommend changing him

to Neocate or Vivonex on the feeding tube and do this for a month or two

and do endoscopy and colonoscopy for eos's and treat very agressively with

steroids IV preferrably. Changing to the elemental formula will allow for

the biopsies to show where he has the Primary Eos's not just triggered by

allergins. Does you son have any problems with weight gain. How old and

how much does he weigh and height?

Has he ever had huge doses of IV steroids before?

----------

>

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

> Subject: [eosinophilic gastroenteritis] Re: GI's big answers

> Date: Friday, August 07, 1998 1:06 AM

>

> They have put in the hospital countless (10-12 times) and given him

> this bowel rest as they call it. Where they put in an IV and give his

> tummy a few days to heal but you are right this is very short term.

> was back to square one in a week or two, back with a very irritated

tummy.

> This is just not cutting it anymore and the GI knows it. He said to me

> today, it seemed that took 1 step forward and 2 back. We have an

> appt to see this Dr. Vanderhoof in Omaha August 18th. Ideally, he will

> turn out great since he is only 4 hours away and it possible to follow

with

> him on a semi-regular basis. I am going to call tomorrow and ask what

his

> plans for are.

>

> was on a ng tube this year for 4 months and did wonderful, never

> complained of pain. Ideally, we would be able to let him eat without a

> tube. I don't know, maybe we can't. That is one of my reasons for

seeing

> another doc. Our GI doc has not mentioned going back to the tube and

> truthfully, we really don't want to go back to the tube but if it makes

the

> pain and irritation go away, then maybe that is what has to be done.

>

> has never had an eos free biopsy.

>

> If you do end up showing eos's anywhere your child probably has

> Primary Eos Gasttritis or Esophigitis or Colitis. This is the disease

and

> the Eos will not go away if you eliminate all foods.

>

> What is Colitis? Symptoms?

>

> Thanks

> Dawn

>

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

>

August 6, 1998

has a really hard time with weight gain. The only time he gained

weight was when he was tube fed the hypo allergenic formula. He has lost

all that since. Right now he is 34 months old, 34 inches tall and around

23 lbs. At 12 months, he weighed 20 lbs when they did the fundo. It has

been downhill ever since.

Dawn

..

August 6, 1998

I literally can't believe it. Spencer's story is exactly the same. Please

call me if you would like to talk about any of this. Dr. Putnam at chp

would love to see your son. You should really put the call into him or

email your story to him. He might want to do a paper on our two kids. He

was so upset that my son had the fundo done. My son did go downhill once

his fundo was done as well. Although he had to be life flighted to the

children's hospital when they finally did it. That's what it took. Can I

ask why they don't have him on an elemental formula with all of those eos's

in his system? Seems like that would be a given under his severe

circumstances. And does he have a g-tube?

My phone is ext 46 at the Mc house in Pittsburgh

or my cell phone is

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>

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

> Subject: [eosinophilic gastroenteritis] Re: GI's big answers

> Date: Friday, August 07, 1998 1:54 AM

>

> has a really hard time with weight gain. The only time he gained

> weight was when he was tube fed the hypo allergenic formula. He has lost

> all that since. Right now he is 34 months old, 34 inches tall and around

> 23 lbs. At 12 months, he weighed 20 lbs when they did the fundo. It has

> been downhill ever since.

> Dawn

>

> .

>

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

>

August 7, 1998

He doesn't have a g-tube, he eats orally. He eats ok most of the time,

sometimes very poorly. Since he has been on the Prednisone he eats a lot

better but that just means more stools. It sounds like Spencer is a lot

sicker than . To just look at , he looks like a normal kid but

feed him once and look out. His stools smell so bad they could clear a

room. We also see a lot of undigested food in them. Our GI doc told us

that is common with EG.

Dawn

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

Subject: [eosinophilic gastroenteritis] Re: GI's big answers

Date: Friday, August 07, 1998 12:55 AM