Does anyone have a child with EE (eosinophilic esophagitis)?

Dana - posted on 08/20/2012

My son had massive blood in his stool the first several months of his life, but thankfully, we were able to remedy it with a special formula. But those can be hard to find! I wish I had known about this company then, but you can check out www.star-medical.net. They have a ton of specialized formulas that places like Target and other grocery stores do not sell. I hope that helps!

Christina - posted on 08/01/2012

Hello everyone,

I have a son that is seven. We have been dealing with this for almost two years. We have just recently got back from a few day's stay at Milwaukee Children's Hospital. My son didn't eat for over four days. We have had food testing done and everything comes back fine. He says that sometimes it is hard to breath. We have had asthma testing and all looks good. He takes medication that the hospital has made for him. Does anyone else have this problem with their child...

Samantha - posted on 03/16/2010

my son has ee and he is almost 15 months i still dont understand it well but he is on zantac 3ml and bedtime and prevacid 15mg tabs in the morning he has also had surgery from pyloric stenosis when he was a month old if anyone can help i would gladdly like the help

Teresa - posted on 02/08/2010

I have a 10 year old who was diagnosed with EE in September. Since then we have been free of milk, wheat, soy, egg, peanuts, treenuts, seafood, and corn and he has been on an elemental formula and he takes an inhaled steroid. Although he reacted badly to the formula due to other health issues, he has responded well to the medication and diet. His last scope was clear so we are now food trialing wheat. Facebook has a couple of groups for families with eosinophilic disorders and check out www.apfed.org. They have tons of information.

Kathy - posted on 02/08/2010

Cincinnati Ohio Children's hospital was great for my friends son. I really don't know what they did, but he is making fantastic progress and I feel it would be worth a call to the hospital.

Iridescent - posted on 02/03/2010

A MicKey button is a g-tube that the part that hangs out is removable so it's nearly flush with the tummy. It allows a lot more freedom of motion for the child, less visible differences between them and healthy children.

My daughter has a g-tube but now gets the bulk of her diet by mouth (except at night). Her diet is so different from ours, but we've always eaten our regular foods with her at the table with her foods. She knows they're different, and sometimes she gets mad, but there is more to mealtime than just food; it's a social experience. It also teaches her the limits of her disease (she does not have EE but does have a very restricted diet) and how to deal with differences as she gets older. It will continue to be an issue I suspect, especially as a teen. The best way for her to deal with it in the future though is to start now so it's just a normal part of her life.

Elizabeth - posted on 02/03/2010

Becky:
Pardon my ignorance - what is a Mickey button? Is that for a GI tube? My son can swallow, just not anything thin. For the 18+ months since he was discharged from the NICU, we have had to use Simply Thick for everything he drinks.
Do share how you coped with the elemental diet! Do you have older children? Did you eat in front of your son? We aren't there yet, but my mommy radar is going off...
Thanks for the share,
Elizabeth

Elizabeth - posted on 02/03/2010

Sarah:
Thanks so much - I did and please feel free to have her do the same.
Three months v. three years...ugh.
Elizabeth

Sarah - posted on 02/03/2010

I have a friend on my list whose daughter does. Her name is Julia...friend me and I can get you connected with her. She has been living with it for 3 years now!

Sarah

Elizabeth - posted on 02/02/2010

We are on the verge of initiating the elemental diet at the age of 2. He was started an elimination diet at the beginning of Oct 09 and the repeat biopsy shows no improvement. He is now on ingested steroids (budesonide slurry), immunotherapy injections 2x/week and on-going elimination diet. He is rescheduled for another biopsy in April. CHoPs (Children's Hospital of Philadelphia) is supposedly the nation's foremost treatment center for EE - I believe our doctors are inordinately competent, though not from CHoPs. I am wondering what everyone's experience is with allergy testing and if they have found EE is largely food, environment or immune response in their test results. How much difficulty are we in for with an elemental diet???

Becky - posted on 02/02/2010

my son has ee as well as multiple ltfa. he was 2+ yrs on a strict elemental diet via a mickey button. I would strongly suggest you look into National Jewish in Denver, CO. They are the nations' leading respiratory and allergy hospital and they gave us our son's life back. He now has a diet of over 40 foods and no longer takes any kind of formula. Best of luck on your difficult journey!

Winter - posted on 02/02/2010

There is a group on Cafemom.com for mom's who have children with EE You may want to check them out. Sorry I don't have more info. We are dealing with other digestive issues.

Amy - posted on 02/01/2010

he uses flovent. He took allergy shots as a child but still has many allergies and should be reevaluated for more shots. unfortunately he has been a low priority since our son is special needs. Heck i haven't even gone to the dentist. lol. He has never had reflux persay, and has not been directed in that direction. The flovent seems to keep it in check but if things get bad again he will have to be dialated again.

Elizabeth - posted on 01/31/2010

Amy: Thanks for some feedback about your husband - does he take reflux meds or immunotherapy (allergy shots)? Has anyone put him on swallowed Flovent (normally an inhaled steroid)? I am trying to figure out what people are using for a remedy of symptoms since there is no cure. Thank you!

Amy - posted on 01/31/2010

well i don't have a child with it but my husband has it. Years and years of multiple allergies. He has had his esphagus dialated once and has had to have food removed at the ER a couple of times. They still can't find what his trigger is but he just has to chew his food well or it gets stuck and he has to puke it up. Don't know if this was helpful, but maybe it shows u can have nearly a normal life with EE.

Elizabeth - posted on 01/31/2010

Thanks, Chelle - please feel free to share my info with your SIL - I think it would be hugely helpful to share in dealing with this complex disease. My email is elizabeth.L.schultz@att.net.
I appreciate your time in sharing about your niece.
Elizabeth

Chelle - posted on 01/31/2010

I have a SIL whose daughter has EE. She is on the elemental diet though and having the same issues of not getting better. But maybe you 2 can share stories together. She is in the kids w/ food allergies group I believe and she is on my friends list. Her name is Stephanie.