Clayton update and continuing frustrations

[Guest guest]

Hi All:

Yes I am alive and still frustrated. We had the endoscopy yesterday and the ph

probe afterwards which was removed today. The endocopy went well and showed

some esphagistis but not too bad. However, the GI is more concerned about the

biopsy results. They should be in next week.

We got the preliminary results on the ph reading via a message from the nurse

(we missed the call). She said it showed reflux (surprise surprise -

considereing I do not think the probe went above 4 the whole 24 hours).

Reminder Clayton was on santac and propulsid during this probe. Well the

nurse left some convuluted message that Clayton was to stay on zantac this

weekend and then they were going to put him back on prilosec (suspension

liquid this time) on Monday. GUESS WHAT - NO WAY. My son was on prilosec for

almost a whole year (just went off it 2 months ago) and I do not want him back

on it. IT DID NOT HELP. He still refluxed while on it. Also adults are only

supposed to be on it for 3 months and there are no long turn studies of its

use in kids, thus the GI is going to get a call on Monday from my very upset

hubby (mind you we love our GI). It is just how long am I supposed to keep

pumping my kid full of medicine that I know does not help. AGAIN MY

FRUSTRATIONS AND SORRY FOR VENTING - I JUST CANT WATCH MY KID SUFFER ANYMORE

and continue not eating.

On a great doc note - my GI's father in law passed away on Tuesday and he

called me Wednesday and said that it was very important that the endosocpy and

probego forward although one of his partners was probably going to do it. I

was not thrilled with this but ndestood. So imagine my shock when he was there

to perform the procedure. He said that he came in solely to do Clayton

because he felt he had to. Although I may be pissed at him he still is a

great doc.

Love,

Sharon

[Guest guest]

Hi,

I know exactly how you feel and sympathize with you. I feel the exact same

way about . Why is it that he must continue to be in pain everyday.

I was just talking yesterday as to how I wonder how much these docs really

know about this disease. It seems it is all just a guessing game. I feel

like and probably the other kids too are just guinea pigs. It seems

all the gi ever wants to do is more med, let's increase this one, decrease

this one, try this new one and none of them ever really seem to make a

difference. Sorry I guess you got a little of my venting too.

has been so/so but the pain is just breaking my heart. He is playing

with toys, stops doubles over and says, " Mommy, my tummy hurts " , then he is

like that for a minute or so and then he just goes back to playing with

toys. My son is 2 and is used to dealing with pain on a daily basis.

Something is wrong with that.

Have they thought about doing a fundo on Clayton? I don't know if it will

make much of a difference though. It did stop 's refluxing but

immediately after the surgery his stools went from 2-3 a day to 15-20 a day

sometimes.

Dawn

----------

> From: SDidinsky@...

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

> Subject: [eosinophilic gastroenteritis] Clayton update and continuing frustrations

> Date: Friday, June 26, 1998 9:04 PM

>

>

>

>

> Hi All:

> Yes I am alive and still frustrated. We had the endoscopy yesterday and

the ph

> probe afterwards which was removed today. The endocopy went well and

showed

> some esphagistis but not too bad. However, the GI is more concerned about

the

> biopsy results. They should be in next week.

>

> We got the preliminary results on the ph reading via a message from the

nurse

> (we missed the call). She said it showed reflux (surprise surprise -

> considereing I do not think the probe went above 4 the whole 24 hours).

> Reminder Clayton was on santac and propulsid during this probe. Well the

> nurse left some convuluted message that Clayton was to stay on zantac

this

> weekend and then they were going to put him back on prilosec (suspension

> liquid this time) on Monday. GUESS WHAT - NO WAY. My son was on prilosec

for

> almost a whole year (just went off it 2 months ago) and I do not want him

back

> on it. IT DID NOT HELP. He still refluxed while on it. Also adults are

only

> supposed to be on it for 3 months and there are no long turn studies of

its

> use in kids, thus the GI is going to get a call on Monday from my very

upset

> hubby (mind you we love our GI). It is just how long am I supposed to

keep

> pumping my kid full of medicine that I know does not help. AGAIN MY

> FRUSTRATIONS AND SORRY FOR VENTING - I JUST CANT WATCH MY KID SUFFER

ANYMORE

> and continue not eating.

>

> On a great doc note - my GI's father in law passed away on Tuesday and he

> called me Wednesday and said that it was very important that the

endosocpy and

> probego forward although one of his partners was probably going to do it.

I

> was not thrilled with this but ndestood. So imagine my shock when he was

there

> to perform the procedure. He said that he came in solely to do Clayton

> because he felt he had to. Although I may be pissed at him he still is a

> great doc.

>

> Love,

> Sharon

>

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

>

[Guest guest]

In a message dated 98-06-26 22:45:05 EDT, you write:

<< My son is 2 and is used to dealing with pain on a daily basis.

Something is wrong with that.

Have they thought about doing a fundo on Clayton? I don't know if it will

make much of a difference though. It did stop 's refluxing but

immediately after the surgery his stools went from 2-3 a day to 15-20 a day

sometimes. >>

Dawn, it sounds like you need some cyberhugs, too.... it isn't right for

little kids to have to endure pain. I sure hope your doc succeeds in what

must seem like hit-or-miss therapy for 's tummy problems.

When had his fundoplication, did he also have a pyloroplasty too?

Sometimes they are done at the same time as the fundo. I was concerned about

the possibility of postoperative dumping syndrome, which is something like

what you have experienced with . The GI doc told me that the incidence

of this is relatively low unless a pyloroplasty is done. (Matt did not have a

pyloroplasty and did not develop dumping syndrome.) But anyway, I do

understand your concern because it was one of my fears as well--solving one

problem (reflux) and developing another.

Hugs!

Lynda

[Guest guest]

Dear Sharon,

I agree with you--I would be very concerned about placing little Clayton back

on Prilosec. The longest Matt was ever on it was for five months and even

that made me nervous.

My 1995 Nursing drug reference states, " prolonged two year studies in rats

revealed a dose-related increase in gastric carcinoid tumors; studies in

humans have not detected a risk from short-term exposure. Further study is

needed to asses the impact of sustained hypogastrinemia and hypochlorhydria.

The manufacturer recommends that therapy with omeprazole not exceed the

indicated duration. "

This same reference also states that omeprazole should not be used for

maintenance therapy.

More research may have been done since 1995, but I would be like you--asking

lots of pointed questions!

BTW, Prilosec doesn't help reflux from what I understand, it only helps lower

the gastric pH so it doesn't cause esophagitis or ulcers. So the cisapride

would have been the only thing that would have helped the reflux and it

doesn't sound like it is doing enough to help Clayton.

I feel for you! I can't remember how many times I left the hospital in

tearsafter Matt's endoscopies.

Lynda

[Guest guest]

In a message dated 98-06-27 12:45:29 EDT, you write:

<< Hi, what is this? I haven't heard of this before.>>

A fundoplication (or fundoplasty) is done at the top of the stomach where it

joins the esophagus. A pyloroplasty is done at the other end of the stomach,

where it joins the duodenum (small bowel). The pyloric valve is at that

juncture and that is why it is called a pyloroplasty. Kids who have reflux

which is due to delayed gastric emptying may also have a pyloroplasty

done--the fundo helps food from sloshing back up into the esophagus and the

pyloroplasty opens up the pylorus so the food empties faster--which, in turn,

would also keep it from staying in the stomach and sloshing back up into the

esophagus.

>> definitely has dumping syndrome but I have never been told it was

postoperative. Is this a result of the surgery? >>

From _Pediatric Gastrointestinal Motility Disorders_ Edited by Hyman, MD,

Chapter 4, Surgical Considerations: Upper Gastrointestinal Motility

Disorders:

" Pyloroplasty reduces coordination of gastric emptying between the stomach and

duodenum. Thus, the digestive physiology is altered and " dumping " may

result. "

BTW, you can get free information mailed to you on reflux and other GI

motility disorders by contacting the Children's Motility Disorder Foundation

(CMDF) at 1-. The organization is non-profit and will send you a

lot of technical information on reflux, fundoplication, fundoplication

failures, etc. I was very grateful for the information I received prior to

Matt's surgery a couple of years ago.

Lynda

[Guest guest]

> When had his fundoplication, did he also have a pyloroplasty too?

Hi, what is this? I haven't heard of this before.

I was concerned about

> the possibility of postoperative dumping syndrome, which is something

like

> what you have experienced with .

definitely has dumping syndrome but I have never been told it was

postoperative. Is this a result of the surgery?

Thanks

Dawn

[Guest guest]

Sorry to hear all of this.....I am thinking of you guys all of the time.

We need to talk on the phone. We have missed each other... Uggg. I know

that we are both very busy with our kiddys. I will call before coming out

to Pittsburgh.

Love,

----------

> From: SDidinsky@...

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

> Subject: [eosinophilic gastroenteritis] Clayton update and continuing frustrations

> Date: Friday, June 26, 1998 8:04 PM

>

>

>

>

> Hi All:

> Yes I am alive and still frustrated. We had the endoscopy yesterday and

the ph

> probe afterwards which was removed today. The endocopy went well and

showed

> some esphagistis but not too bad. However, the GI is more concerned about

the

> biopsy results. They should be in next week.

>

> We got the preliminary results on the ph reading via a message from the

nurse

> (we missed the call). She said it showed reflux (surprise surprise -

> considereing I do not think the probe went above 4 the whole 24 hours).

> Reminder Clayton was on santac and propulsid during this probe. Well the

> nurse left some convuluted message that Clayton was to stay on zantac

this

> weekend and then they were going to put him back on prilosec (suspension

> liquid this time) on Monday. GUESS WHAT - NO WAY. My son was on prilosec

for

> almost a whole year (just went off it 2 months ago) and I do not want him

back

> on it. IT DID NOT HELP. He still refluxed while on it. Also adults are

only

> supposed to be on it for 3 months and there are no long turn studies of

its

> use in kids, thus the GI is going to get a call on Monday from my very

upset

> hubby (mind you we love our GI). It is just how long am I supposed to

keep

> pumping my kid full of medicine that I know does not help. AGAIN MY

> FRUSTRATIONS AND SORRY FOR VENTING - I JUST CANT WATCH MY KID SUFFER

ANYMORE

> and continue not eating.

>

> On a great doc note - my GI's father in law passed away on Tuesday and he

> called me Wednesday and said that it was very important that the

endosocpy and

> probego forward although one of his partners was probably going to do it.

I

> was not thrilled with this but ndestood. So imagine my shock when he was

there

> to perform the procedure. He said that he came in solely to do Clayton

> because he felt he had to. Although I may be pissed at him he still is a

> great doc.

>

> Love,

> Sharon

>

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

>

[Guest guest]

Hi,

I have a question about the stools after the fundo. Are they still that

much? Did they diagnos him with dumping syndrome? There are medications

you can take for that.

andrea.allred@...

----------

>

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

> Subject: [eosinophilic gastroenteritis] Re: Clayton update and continuing

frustrations

> Date: Friday, June 26, 1998 8:53 PM

>

>

>

> Hi,

> I know exactly how you feel and sympathize with you. I feel the exact

same

> way about . Why is it that he must continue to be in pain everyday.

> I was just talking yesterday as to how I wonder how much these docs

really

> know about this disease. It seems it is all just a guessing game. I

feel

> like and probably the other kids too are just guinea pigs. It

seems

> all the gi ever wants to do is more med, let's increase this one,

decrease

> this one, try this new one and none of them ever really seem to make a

> difference. Sorry I guess you got a little of my venting too.

>

> has been so/so but the pain is just breaking my heart. He is

playing

> with toys, stops doubles over and says, " Mommy, my tummy hurts " , then he

is

> like that for a minute or so and then he just goes back to playing with

> toys. My son is 2 and is used to dealing with pain on a daily basis.

> Something is wrong with that.

>

> Have they thought about doing a fundo on Clayton? I don't know if it

will

> make much of a difference though. It did stop 's refluxing but

> immediately after the surgery his stools went from 2-3 a day to 15-20 a

day

> sometimes.

>

> Dawn

>

> ----------

> > From: SDidinsky@...

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

> > Subject: [eosinophilic gastroenteritis] Clayton update and continuing frustrations

> > Date: Friday, June 26, 1998 9:04 PM

> >

> >

> >

> >

> > Hi All:

> > Yes I am alive and still frustrated. We had the endoscopy yesterday and

> the ph

> > probe afterwards which was removed today. The endocopy went well and

> showed

> > some esphagistis but not too bad. However, the GI is more concerned

about

> the

> > biopsy results. They should be in next week.

> >

> > We got the preliminary results on the ph reading via a message from the

> nurse

> > (we missed the call). She said it showed reflux (surprise surprise -

> > considereing I do not think the probe went above 4 the whole 24 hours).

> > Reminder Clayton was on santac and propulsid during this probe. Well

the

> > nurse left some convuluted message that Clayton was to stay on zantac

> this

> > weekend and then they were going to put him back on prilosec

(suspension

> > liquid this time) on Monday. GUESS WHAT - NO WAY. My son was on

prilosec

> for

> > almost a whole year (just went off it 2 months ago) and I do not want

him

> back

> > on it. IT DID NOT HELP. He still refluxed while on it. Also adults are

> only

> > supposed to be on it for 3 months and there are no long turn studies of

> its

> > use in kids, thus the GI is going to get a call on Monday from my very

> upset

> > hubby (mind you we love our GI). It is just how long am I supposed to

> keep

> > pumping my kid full of medicine that I know does not help. AGAIN MY

> > FRUSTRATIONS AND SORRY FOR VENTING - I JUST CANT WATCH MY KID SUFFER

> ANYMORE

> > and continue not eating.

> >

> > On a great doc note - my GI's father in law passed away on Tuesday and

he

> > called me Wednesday and said that it was very important that the

> endosocpy and

> > probego forward although one of his partners was probably going to do

it.

> I

> > was not thrilled with this but ndestood. So imagine my shock when he

was

> there

> > to perform the procedure. He said that he came in solely to do Clayton

> > because he felt he had to. Although I may be pissed at him he still is

a

> > great doc.

> >

> > Love,

> > Sharon

> >

> >

------------------------------------------------------------------------

> >

[Guest guest]

Hi,

Just reading through all of the emails over the weekend and I guess I

replyed too quickly before reading them all. Dumping syndrome a disease

with or without the surgery. It can be caused through the Nissen surgery.

My son had the Pyloriplasty at two weeks of age and then the Nissen at 9

months. He has been diagnosed with dumping syndrome. But to be sure you

should have a gastric emptying study done. It lasts about 2 hours and they

watch how fast the food empties the stomach and into the pyloris to small

intestines. My son had this done and by the time they could start the

test, he had already emptied 75% of his stomach contants that they had just

given him 2 minutes before. I highly recommend this test. They put them

in a tube like thing. Kinda looks like an MRI machine but smaller. There

are two different medications for this disease. I am told that they work

wonders. The only thing is that they are given by injection. My doctor

said point blank that they hurt like hell. They are given three times a

day. He wants to give it a week trial, if it works they will put in a

small permanate med IV port so he doesn't have to go through 3 terrible

shots a day.

andrea.allred@...

----------

>

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

> Subject: [eosinophilic gastroenteritis] Re: Clayton update and continuing

frustrations

> Date: Saturday, June 27, 1998 10:56 AM

>

>

>

> > When had his fundoplication, did he also have a pyloroplasty too?

> Hi, what is this? I haven't heard of this before.

>

> I was concerned about

> > the possibility of postoperative dumping syndrome, which is something

> like

> > what you have experienced with .

> definitely has dumping syndrome but I have never been told it was

> postoperative. Is this a result of the surgery?

>

> Thanks

> Dawn

>

>

>

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

>

[Guest guest]

The stools were never that bad until after the fundo. My hubby says it is

like they stood him on his head after the fundo. Instead of throwing up,

he started having diarrhea. When was tube fed, he had 1-2 stools a

day and they were sorta formed. That is the only time they were even sorta

formed. After we started giving him foods again, they were the same. On

all his meds, he has 5-7 on normal days. 10-12 on bad days. That is

avoiding all of our trouble foods and giving him all his meds. What meds

do they give for dumping syndrome? Before the fundo, he had diarrhea but

not bad 3-4 a day but I think he got rid of most of it by throwing up so he

didn't have that much to poop out.

Dawn

----------

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

Subject: [eosinophilic gastroenteritis] Re: Clayton update and continuing frustrations

Date: Monday, June 29, 1998 3:47 PM

Hi,

I have a question about the stools after the fundo. Are they still that

much? Did they diagnos him with dumping syndrome? There are medications

you can take for that.

andrea.allred@...

----------

>

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

> Subject: [eosinophilic gastroenteritis] Re: Clayton update and continuing

frustrations

> Date: Friday, June 26, 1998 8:53 PM

>

>

>

> Hi,

> I know exactly how you feel and sympathize with you. I feel the exact

same

> way about . Why is it that he must continue to be in pain everyday.

> I was just talking yesterday as to how I wonder how much these docs

really

> know about this disease. It seems it is all just a guessing game. I

feel

> like and probably the other kids too are just guinea pigs. It

seems

> all the gi ever wants to do is more med, let's increase this one,

decrease

> this one, try this new one and none of them ever really seem to make a

> difference. Sorry I guess you got a little of my venting too.

>

> has been so/so but the pain is just breaking my heart. He is

playing

> with toys, stops doubles over and says, " Mommy, my tummy hurts " , then he

is

> like that for a minute or so and then he just goes back to playing with

> toys. My son is 2 and is used to dealing with pain on a daily basis.

> Something is wrong with that.

>

> Have they thought about doing a fundo on Clayton? I don't know if it

will

> make much of a difference though. It did stop 's refluxing but

> immediately after the surgery his stools went from 2-3 a day to 15-20 a

day

> sometimes.

>

> Dawn

>

> ----------

> > From: SDidinsky@...

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

> > Subject: [eosinophilic gastroenteritis] Clayton update and continuing frustrations

> > Date: Friday, June 26, 1998 9:04 PM

> >

> >

> >

> >

> > Hi All:

> > Yes I am alive and still frustrated. We had the endoscopy yesterday and

> the ph

> > probe afterwards which was removed today. The endocopy went well and

> showed

> > some esphagistis but not too bad. However, the GI is more concerned

about

> the

> > biopsy results. They should be in next week.

> >

> > We got the preliminary results on the ph reading via a message from the

> nurse

> > (we missed the call). She said it showed reflux (surprise surprise -

> > considereing I do not think the probe went above 4 the whole 24 hours).

> > Reminder Clayton was on santac and propulsid during this probe. Well

the

> > nurse left some convuluted message that Clayton was to stay on zantac

> this

> > weekend and then they were going to put him back on prilosec

(suspension

> > liquid this time) on Monday. GUESS WHAT - NO WAY. My son was on

prilosec

> for

> > almost a whole year (just went off it 2 months ago) and I do not want

him

> back

> > on it. IT DID NOT HELP. He still refluxed while on it. Also adults are

> only

> > supposed to be on it for 3 months and there are no long turn studies of

> its

> > use in kids, thus the GI is going to get a call on Monday from my very

> upset

> > hubby (mind you we love our GI). It is just how long am I supposed to

> keep

> > pumping my kid full of medicine that I know does not help. AGAIN MY

> > FRUSTRATIONS AND SORRY FOR VENTING - I JUST CANT WATCH MY KID SUFFER

> ANYMORE

> > and continue not eating.

> >

> > On a great doc note - my GI's father in law passed away on Tuesday and

he

> > called me Wednesday and said that it was very important that the

> endosocpy and

> > probego forward although one of his partners was probably going to do

it.

> I

> > was not thrilled with this but ndestood. So imagine my shock when he

was

> there

> > to perform the procedure. He said that he came in solely to do Clayton

> > because he felt he had to. Although I may be pissed at him he still is

a

> > great doc.

> >

> > Love,

> > Sharon

> >

> >

------------------------------------------------------------------------

> >