Friday, August 31, 2012

EoE: Eosinophilic Esophagitis Diagnosis


I just spoke with our son's GI doctor in regards to the test results from his endoscopy.  The biopsies show moderate to severe inflammation of his esophagus.  Positive for EoE (Eosinophilic Esophagitis).

Not the results I was hoping for...but what I suspected all along.



Learn more here:
APFED


He will be starting a steroid (mixed with packets of splenda)  today, once a day, that is swallowed to keep the inflammation down.  He will also continue the ant-acid because it keeps the acid down which makes him more comfortable.

The doctor wants to see him again in six weeks, and wants another endoscopy in 8-10 weeks to determine if the medicine is helping.


In the meantime, she ask that I make another appointment with his allergist to do more allergy testing.  Food allergies are thought to cause the inflammation to the esophagus causing EoE.  She said she believes that he will be on the steroid long term.

However, being the stubborn anti-medicine freak that I am don't agree...yet.  I see a familiar pattern here unfortunately.  When our son first started his rashes and eczema as an infant every doctor wanted to treat the rash.  They didn't put enough focus on what was CAUSING the rash...they prescribed lotions that are now off the market because they were causing Lymphoma in children.  So my poor baby lived for eight months in pain and discomfort while I applied this cream when all that we needed to do was change his diet.

Many EoE patients have been put on diet restrictions with fantastic results...no medicine.  My thoughts are that he is most likely allergic to wheat.  I will have the allergist retest for certain foods and see what the results are.  (he never really grew out of his wheat allergy, the test show that it lowered and doctors told me to reintroduce to his diet...no rash or hives occurred so we assumed that it was okay)  Soooo...I will do more research and talk with more parents of children that also have EoE (that is where you come in) and gets results from allergists and see where we are in six weeks.

I know many of you are familiar with EoE and have traveled down this same path.  What has been helpful for you and your children?  Did you do a diet restriction or steroid treatment?   Any problems with the steroid?  Please share!

-Elizabeth



6 comments:

  1. I'm a little unfamiliar with the steroid cocktail you mention with the splenda. Steroids are the gold standard first line treatment, though. You really do need to get that inflammation under control and healed to prevent further damage (ligations and strictures). You are right, though, you DO want to fix the diet and not just rely on the steroids alone. Huge, monster {{{hugs}}}

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    1. Honestly I'm not sure which is worse the steroids or the large amount of Splenda. Yuck. But yes, I agree that the steroids are needed to get the inflammation under control. Thanks for the huge monster hug...not sure I ever got one of those! :)

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  2. I'm with you with the attitude that DR's prescribe to cover up the real cause. I encourage you to keep looking to figure out what's causing it rather than only a way to calm it down. The dr's did the same thing with my sons milk allergy--reflux medicine for the spitting up, prescription steroids for the eczema, etc, when really all we had to do was take away milk. I would bet there are a lot of ideas out there for more natural approaches. Good luck to you and your family! I will be following your journey!

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  3. My 4 year old was just diagnosed with EoE about 3 weeks ago. We already knew he had numerous allergies - milk, peanuts, pork, beef, tuna and shrimp. We have been avoiding milk since he was 3 months old and peanuts since he was 18 months and everything else since last summer. In the last 2 weeks, he had 130 prick tests in his little arms for food and environmental allergies and patch testing for 29 foods. And this week had a blood test for all the milk proteins (since he was showin only allergic to the fresh milk on his prick tests) and peanuts (negative on prick) and all tree nuts (positive on prick tests). The problem is, he hasn't had anything he test allergic to in over a year. He has a very limited diet since he has sensory issues and is in pain from the EoE. He prefers crunchy since soft foods get stuck. He sees a feeding therapist and has made little progress in 6 months but it is now evident that is because of the pain. He has started the steroid and we see the GI doctor next week. I think we may have to put him on a formula because he is just not eating. Good luck to you. This is such a frustrating disease.

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  4. I am a grandmother of a 21 month old with EOE. I have done tons of research and have a background in GI issues. Luckily my grandson was diagnosed when he was, several months ago. My daughters GI is against steroids, IF, a the prescription formula works. Thankfully, he has gained two pounds and is tolerating the formula. He is off all foods except for apples. He is having another endoscopy in two weeks to see if his esophagus has cleared up. He tested positive for allergies of dairy, beef, nuts and i think a few other things. check out APRED.ORG and Cured foundation. There is a lot of information there. My grandson will be going to a clinic that specializes in EoE and will be teamed with a specific GI and nutritionist etc. Hope this helps.

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  5. Hello! My son is three and was diagnosed when he was 12 months old. We've done an elimination diet since diagnosis (top 8 plus what he tested positive to on allergy tests), but initially did a few months of steroids to help heal his esophagus so he would want to eat. One thing that is important to understand is that the allergies that allergy tests (blood tests and skin prick tests) are different from EoE triggers. So, just because a patient tests positive for certain foods does not mean that that food will be an EoE trigger. Allergy tests can be useful as a guide for what foods to eliminate and what foods to trial, but it in no way is an exact indicator of what triggers the EoE. It is common for patients to test positive to no foods, but still have a large amount of EoE trigger foods.

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