Spencer

[Guest guest]

A severed vagus nerve is not a standard part of a Nissen from all that I

understand about it. Was this done for another reason (or another

misdiagnosis)?

Sorry to hear so much is wrong with your son's tummy. What devastating news,

but at least you have some answers.

Lynda

[Guest guest]

Hi all!!!

I have not posted in about 5 weeks. We are from Utah and are currently in

Pittsburgh PA for Spencer. We are staying at the Mc house.

Things are going better than we have expected. They have diagnosed Spencer

with several things new and I was wondering if anybody out there has any

kids with the same thing. 1. Neuropathic Motility Disorder of the Small

bowel. 2. Non-functional Stomach. 3. Primary Eosinophilic Colitis (the

disease) and 4. Dumping syndrome. He also has Eosinophilic Gastritis and

Esophigitis (induced by allergins) which we already new about along with

severe allergies and athsma. He is post Nissen Fundo for vomiting. This

was done in October and am told that it was a misdiagnosis of reflux. They

say that the severe Primary Eosinophlic Colitis cause severe diarrhea and

projectile vomiting. He is now suffering from a severed vegus nerve and of

course the inability to vomit and burp. I am not too happy about this.

Spencer is on high doses of steroids and now has a centeral line for TPN as

well as having a g-tube. Sorry for such a run on paragraph. If you have

any info that may help me please respond.

Thanks,

andrea.allred@...

[Guest guest]

Matt sees Liacouras at CHOP (Phila.). Plus we just had a consult with

Dr. at St. 's and he said he would be willing to coordinate

care with Dr. Liacouras if I want. It is sort of like wearing a belt and

suspenders but I think that is what I will do. Next step will probably be an

endoscopy and pH probe to see if the Thal fundo is functioning properly.

Lynda

[Guest guest]

Hi, just wondering but what dose of steroids is Spencer on?

Dawn

----------

To: eosinophilic gastroenteritis (AT) onelist (DOT) com; gtube gtube@...>

Subject: [eosinophilic gastroenteritis] Spencer

Date: Wednesday, August 05, 1998 5:34 PM

Hi all!!!

I have not posted in about 5 weeks. We are from Utah and are currently in

Pittsburgh PA for Spencer. We are staying at the Mc house.

Things are going better than we have expected. They have diagnosed Spencer

with several things new and I was wondering if anybody out there has any

kids with the same thing. 1. Neuropathic Motility Disorder of the Small

bowel. 2. Non-functional Stomach. 3. Primary Eosinophilic Colitis (the

disease) and 4. Dumping syndrome. He also has Eosinophilic Gastritis and

Esophigitis (induced by allergins) which we already new about along with

severe allergies and athsma. He is post Nissen Fundo for vomiting. This

was done in October and am told that it was a misdiagnosis of reflux. They

say that the severe Primary Eosinophlic Colitis cause severe diarrhea and

projectile vomiting. He is now suffering from a severed vegus nerve and of

course the inability to vomit and burp. I am not too happy about this.

Spencer is on high doses of steroids and now has a centeral line for TPN as

well as having a g-tube. Sorry for such a run on paragraph. If you have

any info that may help me please respond.

Thanks,

andrea.allred@...

[Guest guest]

In a message dated 98-08-05 20:19:33 EDT, you write:

<< There is a risk of severing the vagus nerve when the Nissen is done. Yes

you are right they don't do it on purpose. Unfortunately it happened to

Spencer and on top of that if we had good doctors at the time we would had

avoided the whole surgery and treated the colitis which they didn't care to

look into. >>

That is just awful. The wrong surgery plus a complication like that. I guess

malpractice is a side issue because all you want is to see Specer well.

Lynda

[Guest guest]

14 cc's everyday.

----------

>

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

> Subject: [eosinophilic gastroenteritis] Re: Spencer

> Date: Wednesday, August 05, 1998 7:08 PM

>

>

>

> Hi, just wondering but what dose of steroids is Spencer on?

> Dawn

>

>

> ----------

>

> To: eosinophilic gastroenteritis (AT) onelist (DOT) com; gtube gtube@...>

> Subject: [eosinophilic gastroenteritis] Spencer

> Date: Wednesday, August 05, 1998 5:34 PM

>

> Hi all!!!

> I have not posted in about 5 weeks. We are from Utah and are currently

in

> Pittsburgh PA for Spencer. We are staying at the Mc house.

> Things are going better than we have expected. They have diagnosed

Spencer

> with several things new and I was wondering if anybody out there has any

> kids with the same thing. 1. Neuropathic Motility Disorder of the Small

> bowel. 2. Non-functional Stomach. 3. Primary Eosinophilic Colitis

(the

> disease) and 4. Dumping syndrome. He also has Eosinophilic Gastritis and

> Esophigitis (induced by allergins) which we already new about along with

> severe allergies and athsma. He is post Nissen Fundo for vomiting. This

> was done in October and am told that it was a misdiagnosis of reflux.

They

> say that the severe Primary Eosinophlic Colitis cause severe diarrhea and

> projectile vomiting. He is now suffering from a severed vegus nerve and

of

> course the inability to vomit and burp. I am not too happy about this.

> Spencer is on high doses of steroids and now has a centeral line for TPN

as

> well as having a g-tube. Sorry for such a run on paragraph. If you have

> any info that may help me please respond.

> Thanks,

>

> andrea.allred@...

>

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

>

[Guest guest]

There is a risk of severing the vagus nerve when the Nissen is done. Yes

you are right they don't do it on purpose. Unfortunately it happened to

Spencer and on top of that if we had good doctors at the time we would had

avoided the whole surgery and treated the colitis which they didn't care to

look into.

----------

> From: RRA4U@...

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

> Subject: [eosinophilic gastroenteritis] Re: Spencer

> Date: Wednesday, August 05, 1998 8:04 PM

>

>

>

> A severed vagus nerve is not a standard part of a Nissen from all that I

> understand about it. Was this done for another reason (or another

> misdiagnosis)?

>

> Sorry to hear so much is wrong with your son's tummy. What devastating

news,

> but at least you have some answers.

>

> Lynda

>

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

>

[Guest guest]

Hi Lynda,

I'm sorry but tell me again who you see for gastro?

Dawn

----------

> From: RRA4U@...

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

> Subject: [eosinophilic gastroenteritis] Re: Spencer

> Date: Wednesday, August 05, 1998 7:04 PM

>

>

>

> A severed vagus nerve is not a standard part of a Nissen from all that I

> understand about it. Was this done for another reason (or another

> misdiagnosis)?

>

> Sorry to hear so much is wrong with your son's tummy. What devastating

news,

> but at least you have some answers.

>

> Lynda

>

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

>

[Guest guest]

In a message dated 98-08-06 00:14:05 EDT, you write:

<< Matt sees Liacouras at CHOP (Phila.). Plus we just had a consult

with

Dr. at St. 's and he said he would be willing to coordinate

care with Dr. Liacouras if I want. It is sort of like wearing a belt and

suspenders but I think that is what I will do. Next step will probably be an

endoscopy and pH probe to see if the Thal fundo is functioning properly. >>

Clayton sees Dr. Kelyy too, He is wonderful.

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)