Pseudo Obstruction and Hirschprung's and very Desperate

[Guest guest]

Hi all,

Sorry for the duplicate messages to those on both of these lists, but I

wanted to make sure this got to everyone. Sorry for this being a little

long. I have a couple of questions.

First let me give you a quick background of Spencer. He has had surgery

for Pyloricstenosis, Nissen for projectile vomiting of everything that he

would intake no matter what it was. (Even, Neocate and Vivonex) He has

chronic diarrhea since the Nissen and retches tons. We could never tell

what his stools were like before the Nissen because he would never get

enough food in him to have a stool. So, we can't tell if it is a result of

the surgery or a chronic problem related to some disease or some syndrome.

He has severe allergies, reactive airway disease, maybe dumping syndrome,

maybe -Silver syndrome. Eosinophilic Gastroenteritis for sure (by

lot's of biopsies over time). Not sure if it is the disease or that he is

allergic to Carbs or any thing that is in the Vivonex.

Because of the Chronic diarrhea we decided to try to make a switch to a GJ

tube instead of the normal G-tube. It goes into his jejunum. He has lost

3 lbs in 3 weeks since the switch. He now weighs 16lbs even. We started

out the GJ feeds at 40 cc's 20 cal for about 16-18 hrs. Now we are up to

60 cc's an hour and trying to keep him on as much as we can since he is

loosing so much weight. He is very mobile and it is hard (even with the

enterlite pump) to keep him connected. He hates his tube and pump. His

night feeds are like Gold to us, cause he is miserable during the day on

the pump. More so when he was feed continuous to the stomach, though. Now

at 60 cc's an hour he hardly ever retches anymore. Although this is the

first night at 60 cc's per hour. We will see. But he is still having lots

of poopy diapers. The more we increase the volume the more the volume of

stools. At 50-60 cc's an hour he is also starting to get the white pieces

in them like before. So 60 cc's is the Max I think he can tolerate. I

might need to lower it just a bit. I have just made a new batch of formula

for tomorrow of reg strength. .8 cal per oz. I will be trying this for a

few days and see how it goes, as far as diarrhea and retching. Even though

he still is having diarrhea at 60 cc's it is not as bad as it has been. I

need to try to find the right combo of rate and calories that he can

tolerate to determine if we need to supplement with TPN or something else.

I have heard of giving TPN through the stomach not IV. Has anyone heard of

this? Anyway, on to the questions.....

1. In about 3 weeks my son will be going to a children's hospital to have a

Antroduodenal manometry study done. Based on the results he may have the

Colon Manometry. My question is.. has anybody out there had this test

done? What should I expect? How long did it last? Any information that

any of you might have about these tests would be appreciated.

2. I think that they are specifically testing for Pseudo Obstruction

Syndrome and Hirschprung's Disease. I have read so many things about these

and most of the stuff that I am reading say that the symptoms are

constipation, constipation, constipation and......... at the very end

diarrhea. My son never is constipated. He always has chronic diarrhea.

For those of you that know about these two diseases and syndrome's, is it a

rarer form of these two diseases to have diarrhea? I have been told that

Pseudo Obstruction Syndrome means that it mimics a blockage, but I have

also heard that when you have a blockage, sometimes you can have chronic

diarrhea cause nothing can get by except very loose stools. Am I on the

right track? Can someone explain this to me? Also I heard someone mention

that there is a list specifically for Pseudo Obstruction and Hirschprung's

disease. Who ever it was, can you tell me how to sign up or maybe you can

post this message on their list? I want to feel as prepared as I can when

we go to get this test done.

Also any of you guys who have kids or are on Ped Vivonex, Do you always

have diarrhea with white pieces in them. It kind of looks like cottage

cheese in his diaper laying on top. I want to make sure you know that his

stools are not all white or gray just the pieces the rest is like a tan

color. He has been genetically tested for CF and has had the sweat test

done twice as well.

Also could these tests be testing for other diseases or syndromes than what

I have mentioned? Anyone with an type of info please email me.

Thank you all in advance,

Allred

andrea.allred@...

[Guest guest]

:

Sorry that you are having such a hard time. If you would like I will forward

your post to the Guardian list for Hirshprungs and other tummy/reflux

problems. It is a good list. If you want to subscribe please e-mail me and I

will send you the info.

Hope things start to get better soon - I am worried about that little boy.

When are you going to Pittsburg?

Love,

Sharon

[Guest guest]

Hi, Sharon,

I woke up and could not go back to sleep and started going through my

emails. I would like to know how to subscribe to the list.

----------

> From: SDidinsky@...

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

> Subject: [eosinophilic gastroenteritis] Re: Pseudo Obstruction and Hirschprung's and

very Desperate

> Date: Friday, June 19, 1998 7:41 PM

>

>

>

> :

>

> Sorry that you are having such a hard time. If you would like I will

forward

> your post to the Guardian list for Hirshprungs and other tummy/reflux

> problems. It is a good list. If you want to subscribe please e-mail me

and I

> will send you the info.

>

> Hope things start to get better soon - I am worried about that little

boy.

> When are you going to Pittsburg?

>

> Love,

> Sharon

>

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

>