We finally have a diagonsis for my daughter's stomach issues, she was diagnosed with eosinophilic esophagitis (EE for short.) We are meeting with an allergist soon to determine what is/are her trigger(s) and will hopefully be able to pinpoint down the allergen giving her troubles.
Anyone else out there that can give me some insight as to what to expect?
honeydew / 7488 posts
@LuLu Mom: what exactly is EE? I don't have a lot of experience with allergies with my kids except peanut allergy but there's other moms with different kinds of allergies they're dealing with who could maybe weigh in?
squash / 13764 posts
No insight but so glad you finally have some answers!!! I hope e starts feeling better soon!
grapefruit / 4681 posts
My son currently has an FPIES dianosis, but we are awaiting scopes to rule in/out EE. It is suspected and he is not responding to high dose PPI. He was supposed to have the scopes last week but we ended up in the hospital instead. They are tentatively scheduled for 2 weeks from now so we should know soon.
From my understanding the protocol for FPIES and EE is the same with strict avoidance of the trigger foods, but the difference is EE is more likely a life long diagnosis. I also understand that frequent scopes are more common, often after a few months of introducing a new food to see if LO is reacting. I have heard some research that suggested it can take up to 3 months of consuming a food before reactions occur which makes trials long.
I have been doing a little research but not trying to dive head in until I know for sure what is going on with DS. There is a Facebook group for EE that I can wall you where you can ask questions of other parents or individuals who have EE that might be helpful to you.
grapefruit / 4681 posts
@T-Mom: Here is a little background and overview. Both EE and EoE are used for short when talking about eosinophilic esophagitis. http://www.chop.edu/service/allergy/allergy-and-asthma-information/eosinophilic-esophagitis.html
@LuLu Mom: Have you seen the GI Kids site? There is a lot of EE info on there and it outlines the TIGER protocol for diagnosis and treatment. Might be a good place to start. http://www.gikids.org/
ETA: This one goes right to the EE info: http://www.gikids.org/content/5/en/EosinophilicEsophagitis
blogger / pineapple / 12381 posts
@anbanan15: I think you need to go become a Ped GI doc!
grapefruit / 4681 posts
@Mrs. Jacks: Haha! I would LOVE that! I just want to help these kiddo's (and their parents) anyway I can 
GOLD / wonderful olive / 19030 posts
Yes, we are now scheduled with a pediatric allergist to find out her triggers, when she got her scope last week we discovered that she is NOT allergic to gluten so we are happy with that. (although I've read that this could mean nothing.)
I'm really hoping that we only have 1 trigger to worry about. I've been doing a lot of research and joined a FB group, but now I'm really freaked out at the extremity of some of those cases that I've decided to stop until we know what we are up against. I really can't go into these appiontments with the worst case scenerios in my head, but it's hard. I really want my LO to have a normal life, and feeding from a pack will not give her that. I'm a litle overwelmed with all the information flooding my brain right now.
pomegranate / 3643 posts
Bump!
We are still trying to figure out LO's stomach issues. Waiting on a lot of bloodwork to come back today. They might do an endoscopy to look for EE next month if cutting out dairy isn't helping. I hope it's not EE...but on the other hand there isn't a better diagnosis I'm hoping for either.
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