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beam me up scotty

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ERR. AGGG. GRRRR. *sob*

And the roller coaster returns to our house. We spent all yesterday

morning trying to deal with a retching, screaming Kody. We finally got

him settled down with two doses of Phenergan. Of course, he lost 10

hours of feeds and was already down from the day before due to a pump

malfunction (we spilled half a bag of formula on it!). So he is now

getting dry and cannot handle bolus feeds. He also got into some fruit

loops two days ago (he is supposed to be NPO) and that may have been the

catalast.

In the meantime, we are deciding who and where he will get the IV fluids

this time, the home health company is struggling to find us another

Zevex (this Pet is just not going to work for him). He is supposed to

start school tomorrow - when will it ever end.

I suppose we will have to figure out a way to lock the refrigerator and

the pantry. This is quite a life we lead.

SJHarlow@...

http://www.c4isr.com/harlow

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So sorry Kody is feeling so bad. I hope he makes a turn around soon.

I finally got to talk to Dr. Bornstein today. He was really nice. He said

that he is not sure how much he is going to be able to help since he is

most familiarized with eosinophilic esophogitis and not gastroenteritis.

He did say that in his experience, Gastrocrom does not make any difference

and he seemed shocked too by the amount takes. He seemed to think

the weaning was sort of a waste and that we should just try to go to 1mg

per kg every other day. He said the side effects are lowered a lot by

doing this and we should biopsy him after we try this and see how he is.

It was nice to have someone agree that the Prednisone can make you have a

clean biopsy. Our doc seems to think is cured. Never mind the fact

that he is still having tummy pain and diarrhea. He seems very baffled

that we are not on an elemental diet. Our GI doc seems to avoid this

because wants to eat. Well wanting and his tummy being able to

handle it are two different things.

I have a question for you. Do you feel that the Prednisone in any way

helps digest food? The reason I ask this is that we are again seeing

undigested food in 's stools. This morning he had some chips and then

5 minutes later, a stools with chips all through it. This is what really

scares me. I don't think he is digesting his food or absorbing it

especially without the full use of the Prednisone. Our GI doc said that

seeing undigested food in stools is symptomatic of EG. Does anyone else

see that?

Dr. Bornstein said that at nearly 3 years old and 12 kg, the most important

thing should be to continue his growth.

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)

----------

> From: SJHarlow@...

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

> Subject: [eosinophilic gastroenteritis] beam me up scotty

> Date: Tuesday, September 08, 1998 11:50 AM

>

> From: SJHarlow@...

>

> ERR. AGGG. GRRRR. *sob*

>

> And the roller coaster returns to our house. We spent all yesterday

> morning trying to deal with a retching, screaming Kody. We finally got

> him settled down with two doses of Phenergan. Of course, he lost 10

> hours of feeds and was already down from the day before due to a pump

> malfunction (we spilled half a bag of formula on it!). So he is now

> getting dry and cannot handle bolus feeds. He also got into some fruit

> loops two days ago (he is supposed to be NPO) and that may have been the

> catalast.

>

> In the meantime, we are deciding who and where he will get the IV fluids

> this time, the home health company is struggling to find us another

> Zevex (this Pet is just not going to work for him). He is supposed to

> start school tomorrow - when will it ever end.

>

> I suppose we will have to figure out a way to lock the refrigerator and

> the pantry. This is quite a life we lead.

>

> SJHarlow@...

> http://www.c4isr.com/harlow

>

>

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

>

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