HI, Eli is our 3rd little boy. He was born Aug 23, 2002 weighing 10 pounds! He was sick all the time and diagnosed with a low immune system and just recently the GERD. After we began treatment for the GERD the low levels in his immune system went back up.

The GI DR ordered an upper GI and I couldnt believe what I saw. His esophagus looked huge and he refluxed constantly during the procedure the DR said. She said it was really bad. And, then, she asked us to come back in an hour because she didnt think his tummy was draining properly and it doesnt. We havent started treatment for the bottom. We go back tomorrow for that.

They have him on prilosec (given in applesauce each morning) and bethanecol as of right now. Prevacid seemed to make it worse. He started prilosec a month ago and I thought it was the miracle drug because he didnt throw up after that, he was like a normal child! And, then last saturday hit....... He has been throwing up constantly since...... yesterday he was so weak and tired I called the GI and asked for the nurse... She called back just now ( a day later) and told me when he gets that sick he needs to go to emergency and get rehydrated...... he has been holding most things down today though so I am holding off. I gave him a dose of Prilosec last night as he was falling asleep and again this morning hoping some would stay down.
Thats our story so far..... I am going to read all I can here and learn more. By the way, he has always been unusually chunky for being so pukey. He is 33 pounds. I dont know how and neither does his DR know how he keeps it on. He has always been huge. Thanks for letting me tell his story. He is the light of our lives. The icing on the cake of having boys. :D

It's so sad when they go so long without being diagnosed!

Has he grown a lot since starting the Prilosec, perhaps he needs his dose increased? Maybe he just has a touch of a stomach bug or cold, that will make reflux worse. It could also just be a bad time for him...that's really common for refluxers to go through good weeks and bad weeks (the roller-coaster) and we never really find out why. If he is starting to improve some now this could be all it was.

How many times a day does he usually throw up?

Hi, on his bad days he throws up constantly with anything that goes down it comes right back up and he keeps dry heaving afterwards but today he is better. I think he may have gotten a bit of an upset tummy which set the reflux off again. We just got home from the GI and they doubled his does of prilosec so it is funny you mentioned that. He has lost 2 pounds since last visit though. He weighs 30 poounds though.

Today the GI has decided to do an endoscopy and some other test (cant remember... I was overloaded) to check the lower part that isnt draining well so they can medicate him for that . They should be calling me soon with the appointments cause he wants them ASAP. And, in a month we go back and he said they will do a PH probe. Does this all sound normal? I am really worried about the endoscopy.

And, from now on he said I call him when Eli starts getting bad and he will call the hospital ahead of time so I dont have to wait when I get there. Also, he said after 3 months if he is still having probs after all this they do the surgery. I told him I didnt want the surgery. he said they give him an artaficial muscle? I thought they wrapped part of his intestines around the top....? I am confused. I need to read the website. Thanks. It is nice to know others are out there that know more than me. Finally.

Hi Erin,

You're really lucky to have such a supportive doctor on board for Eli. My Evan is just a few months older than him, born March, 2002. So far Evan's ped. hasn't ordered many tests. We're starting to have some done in a city that's 1 1/2 hours away though. What a great doctor to be willing to call ahead to the hospital so that your waiting time in emergency is less. I've learned that when Evan's really sick, they'll move him ahead as well, especially when they learn about his special needs.

Good luck with Eli's upcoming appointments! Please let us know how they go.

I will keep you posted. I am so glad I found this site! And, I need to make a correction. Up above I typed that prevacid seemed to make him worse. but it was actually Zantac.... the prevacid wasnt covered by insurance .... :D So, many drugs get confusing.....

What you are referring to is not wrapping the intestines around the LES (lower esophageal sphincter), it's wrapping the top part of the stomach around the bottom of the esophagus to help hold it closed...it's called a fundoplication. I would suspect that he meant the fundo when he said they make an artificial muscle, meaning the upper portion of the stomach is used to help keep the esophagus closed off.

There are several relatively new procedures being done in adults (Eg. stretta (http://www.curonmedical.com/Physicians/stretta_gerd.html), endocinch (http://www.endocinch.com/patient_index.cfm), enteryx (http://www.bostonscientific.com/patient_ed/PEprocedureOverview.jhtml?task=tskPEprocedureOverv iew.jhtml&sectionId=3&relId=1002,1026)) but none that I have ever heard about for children. The above mentioned treatments have all only been created within the last couple years so have not been done on children yet. If he was actually not referring to the fundo, please...I would LOVE to hear about the procedure he was referring to.

All the tests they plan to do sound very normal as methods of diagnosing reflux and the severity of reflux. The scope is not bad, try not to worry about it too much...although it can leave them with a sore throat and hoarse voice for a day or so.

Please keep us posted.

He called it fundoplasty which I have never heard of, of course he is very hard to understand... so I am a bit confused. I will clarify that with him and let you know as soon as I do if it is a different procedure than the fundoplication. I am sure that is what he was trying to say. That will be about a month though. Eli is doing well right now so I am so happy!

Yep, that's the fundo...just another way of saying it :( . I was starting to get excited that there was another treatment out there that didn't know about.

Glad to hear he is doing well!!!!

its funny for me to read this. When I got here I knew so little!! I need to update Elis story I know. But, it just seems like I am waiting for the end of it and I never can get there!

:lol: :lol:

its funny for me to read this. When I got here I knew so little!! I need to update Elis story I know. But, it just seems like I am waiting for the end of it and I never can get there!
I'll have to go back and re-read Evan's story sometime. Like you, I knew so little when I first arrived on the boards, but look at us now. We've learned so much and are now able to turn around and help others!