Introduction: DS just diagnosed with EE

twoasone1

Hi everyone.  My DS was just diagnosed with EE.  I was wondering if anyone else here had a LO with the same diagnosis?  I am still trying to learn more about this disorder and what it means for my son.  If anyone else has been or is going through this I would love to talk to you and hear about your experiences with EE.  Looking forward to getting to know you ladies!

KathW

My Son has Eosinophilic Eosphgatis. In the beginning it meant we put him on an extremely limited diet, he was only allowed on 6 foods and on prevacid (which has been wonderful, it has helped much more then zantac) We avoid most of the same things that aggravate his reflux, fried foods, acidic foods, etc.

Ben has EE, reflux and food allergies. The GI dr we are currently seeing explained the EE is kind of like "inside food allergies" with allergies you can see a rash, vomiting, something on the outside letting you know they ate something they are allergic to. EE attacks the inside so you can't always see what is happening or if their throat is irritated, or if something is going on.

Frequent Endoscopy's is what helps keep an eye on it the most. We have one scheduled in a few weeks. We have re-introduced quite a few foods this summer, so we need to look and make sure his body is responding well.  

 Hope that helps, and Welcome!

not_finished

I would highly recommed the Parent2parent forums. 

https://parent-2-parent.com/forums/forum.php

I think you could find a ton of support over there.   

 

 

Tcarrol12

My DD has IA altough completely different from EE she had to have many tests done to check heer throat, esophagus and other bodily functions to rule out other disorders that go hand in hand with IA. We found a support group through Yahoo support groups and in the beginning literally saved her life. You had to be checked out and approved for the groups since its such personal info that is spoken about but we cant life without it. Im sure there is one there for EE . PM me if you need help.

lauraandlee

I have it.  (I'm on here b/c my son has a pituitary abnormality).  But it wasn't until I was in college that they even knew what EE was and could test for it.  Up until then, I had 3 instances since high school of having to go to the hospital because I had a piece of food stuck in my throat b/c it was too big to swallow.  My esophagus is about 1/2 diameter of normal. 

I actually have had 4 endoscopies, but they will not stretch out my throat any more due to risk of rupture.  I can take the steroids, but I choose not to (I'm just not a medication person).  I get food stuck in my throat about 1-2 times a week, and it either eventually goes down (I've learned lots of relaxation techniques over the years), or I have to make it come up (that's usually with protein-rich foods like steak that don't dissolve easily.  

I've got dozens of "food stuck" stories over the years.  But it's totally 100% manageable, and it's never hindered my life in any way (except I'll never enter any eating contests )  Oh, and I have absolutely no food allergies, mild seasonal allergies (don't even take meds), and am healthy in every other way.  

Miller238

Hi there!  This is Melissa's friend.  I just responded to your email!

As you know, my daughter will be getting scoped to test for EE very soon.  I would love to hear others' stories too.