Eosinophilic Esophagitis

[christysue5879]

My 13 year old daughter has been recently diagnosed with Eosinophilic Esophagitis. The treatments of which has been the use of Flovent and an elemental diet (Elecare) have not been working. Her symptoms are immediate regurgetation or vomiting of EVERYTHING SHE EATS OR DRINKS. Water, vitamins, anything that goes in comes right back out. She has lost amlost 30 lbs but is somehow remaining steady for about a month now, thank God. We were wondering if this is hapening or has hapened to anyone else out there, what were they diagnosed with, and what they did to stop these symptoms.


This discussion is related to Severe Stomach and regurgitation Problems.

[MomoJack]

My 13 year old son has EE too, and I really feel for what you're going through. We had a terrible time last year when he missed weeks and weeks of school just because he was gagging and/or throwing up so badly every morning, doubled over in pain. It's a little better now....Last year he did take budesonide mixed with splenda and a tiny bit of water orally for several months (on top of the Flovent), but it didn't appear to do much, and he would gag on it every time. Maybe it did help, but as every dose was a battle we just didn't last with it for very long.

Right now he is taking Flovent in an inhaler two puffs twice a day, fluticasone nasal spray (he has bad aeroallergens), metoclopramide before eating (it's an antiemetic too and helps with gastric emptying), plus, as my son has really bad GERD symptoms (acid reflux) he also takes omeprazole (either 20 or 40 mg depending how bad/good it is that day) in the morning before eating as well. At night he takes aciphex. It's a lot of medications but it seems to be the only regimen that works even just a little bit and we tried many variations. (He takes Claritin and Singulair for the allergies, and is also getting allergy shots/immunotherapy.)

I would take care to give your daughter the liquids that she likes--my son can't take his pills with water for some reason. It makes him retch. He drinks soy milk or even vitamin water or even sparkling water works for him. Last year he couldn't take any pills in the morning without them coming right back up--it's much better now. I also started him on probiotics a year ago and I think they have helped. He takes a formula called Primal Defense. He also started taking enzyme capsules--just a blended formula of a few different ones--and I believe that's helping him digest his food.

That said, he will only eat very few foods, but I am able to make sure that what he does eat is nutritious and as fresh as possible. I try to make sure there are no additives or chemicals, and try to get as much organic produce as I can. He also does well with blended shakes--I get nutritional shake powders (soy based or rice based) at Whole Foods and mix them in a blender with soy milk, and ice and maybe some fruit and he will have that each day. He only has the simplest foods--we don't know if he has food allergies or not, as nothing showed up in the allergy testing we did, but there very well still could be.  

Good luck with all of this!

[ZandE]

I'm sorry your daughter is going through this. My 3 year old son was diagnosed late this summer with EE. He's been on flovent since August, and it's really working towards getting him to eat and gain weight. However it's turned him into a very aggressive, very mean little boy. Does anyone know of any other medicine out there that won't cause such a reaction?

[CalGal]

Have the docs suggested the use of a steroid such as budesonide for awhile to see if it can tamp down the symptoms? You also need to worry about taking things such as vitamins and any other pills, so you may want to discontinue them until you can tamp down her digestive response. EE can be very difficult to treat. I'm sorry to hear your daughter is experiencing the problem.