Hello - an introduction

[Guest guest]

My name is , and my son is . He's 22 months, will turn two on

September 4th. We've had quite a long and complicated journey from his birth to

right here, so I will try to make it as short as possible!

He had pyloric stenosis at first, and after weeks of trying to get the doctors

to listen to me, he had surgery (pyloromyotomy) at 6 weeks of age. He never

really got better, and that was when they figured out he had reflux as well. No

testing was done at that time, because we all knew what it was.

I have a pretty traditional-thinking pediatrician, who was convinced at 7 or 8

months of age that had outgrown his reflux. He persisted with this way of

thinking until 14 months, when we listened to him and took our son off of zantac

and propulsid. I'm sorry, back up a few months. started getting every

respiratory infection known to man. He started coughing chronically, and would

wake up in the middle of the night coughing and crying. It got to the point

where he would cough for at least 5 minutes every morning upon waking. But the

ped kept telling us that it was normal.

Ok, back to where I was ! :-) At 15 months, had a serious choking

incident. He'd choked before, but this one was very serious, and I had to

perform CPR back slaps for him to dislodge the trapped vomit and get him to

start breathing again. At this point, it was obvious to me that the reflux never

went away, and I wanted answers. See, has a very high pain tolerance, and

doesn't display and pain or discomfort when refluxing. To look at him, you'd

never know.

The GI's office was going to make us wait 6 weeks for an appt, so I took

to the one person who knew and was willing to find the answers: his

surgeon. A very wonderful woman who is not the typical surgeon: after the

testing was finished, she said 's case wasn't serious enough to warrant

testing, and she got us in the GI right away for proper medication treatment.

Oh, one quick thing about the tests performed at that time: he had an upper GI

(which showed reflux episodes), a swallow study (normal), a ph study (which

showed about 100 reflux episodes, total of 12% total time refluxing, approx. 15

episodes lasting more than 5 minutes - considered pathologic reflux, higher in

moderation because of his older age), an endoscopy which showed chronic

gastritis in the stomach, 4 lesions in the stomach, a very few number of

eosinophils in the LES area, but no esophagitis, and a gastric emptying study

which showed borderline delayed gastric emptying despite the pyloromyotomy.

So anyway, we went on the medical treatment wagon from there. was

diagnosed with asthma, and it took about 4-5 months of serious intensive

treatments to get it under control. We went on our way until last week, when the

GI wanted to perform testing on because we still saw signs of reflux

activity.

So we repeated the endoscopy, which showed a healthy stomach and duodenum, and

on gross exam showed a healthy esophagus. But the microscopic exam showed " a lot

of " (GI quote, I don't have the specific numbers yet) eosinophils and moderate

inflammation at the 15 cm mark of the esophagus. But the rest of the GI tract

was perfectly healthy. So the dr's were talking about fundoplication, and did a

ph study. The surprising results of the study showed that 's reflux was no

longer pathologic (occurring after 2 hours post eating), and they said that it

was no longer an issue, and wasn't of a severity that could cause the

esophagitis.

So that's where we are now. The dr's think has worsening delayed gastric

emptying, and that's causing the esophagitis. We are doing the gastric emptying

study on Tuesday. Through talking with Sharon, I believe in the likelihood of

food allergies causing the esophagitis more than the delayed gastric emptying

theory. I brought up the subject of food allergies to the GI, and he said he

didn't think had food allergies because the eosinophils were not present

in the small intestine. Since I didn't know anything about eosinophil allergies,

I thought this theory was sound. I am now wondering about it.

I am sorry this is so long! I look forward to hearing more from everyone, and

learning as much as I can so that I make sound decisions for my son.

My immediate question to all of you is this: can you help me find studies or web

pages that talk about eosinophilic esophagitis that only presents in the

esophagus, and not in the rest of the GI tract? I would like this information so

that I can show it to the GI and discuss it with him. I need the knowledge so

that I can properly present my ideas.

Thanks so much for listening!