Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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@... > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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 > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1998 Report Share Posted August 5, 1998 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 > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1998 Report Share Posted August 6, 1998 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) Quote Link to comment Share on other sites More sharing options...
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