Saturday, January 26, 2013

Treatment Part 1: Topical Corticosteriods & Allergy Testing

Lexi at 20 Months old,  07/2010
During the week while waiting for Lexi's pathology report to come back, I did a lot of "googling" on EoE.  I found there were two ways to manage EoE symptoms: Topical Corticosteroids and Dietary Management.

Topical Corticosteroids: 

Lexi at 21 Months of age, 08/2010

In a nutshell, a patient swallows the normally inhaled steroid (Flovent or Budesonide) which travels down the esophagus and calms down the inflammation.  Sort of like applying hydrocortizone to eczema.  I was pleased to learn that very little of the steroid is absorbed through the blood stream and was considered safe for long-term use.   It also had a 74% success rate for putting EoE into remission. What I made me hesitant toward using it, is if a patient stops taking the topical corticosteroid, the EoE will come back.  Thus, requiring a patient to be dependant on topical corticosteroid for long-term or possibly life.  I felt as though this was a cover up and would just mask the real problem at hand: food.  I was so done with covering up Lexi's vomiting with the 'reflux' diagnosis, that I wasn't about to cover up her EoE with a medication (for long-term anyway).  If we could get the bottom of EoE without using medications to cover it up, that was what I was going to do!

When Lexi's GI called with her official biopsy report, his first suggestion of treatment was Flovent. I explained my concerns with it and did not want to simply mask her symptoms...eventually we'd have to know, whether it be sooner, or later.  I wanted to try the Elimination Diet (removing the Top 8 most common food allergens, also a 74% success rate) He was very persistent with using Flovent to treat Lexi.  We eventually agreed to start her on Flovent while slowly introducing the Elimination Diet.

Lexi at age 22 months, 9/2010 and        Lexi's 2nd endoscopy shown with furrowing 
After about a month of Flovent Lexi was still quite symptomatic. Lexi was scoped for the second time (August 2010), and sure enough eosinophils were still throughout her esophagus.  Lexi had 29 eos/hpf in her proximal esophagus (top) and 9 eos/hpf in her distal esophagus (bottom).  Her GI suggested she was improving with these numbers.  I tend to disagree, and here's why:  Lexi was still symptomatic.  She was vomiting almost daily and not eating well.  Also, EoE is a patchy disease, meaning, you can take a biopsy in one area that contains no eos, then take a biopsy 1mm away and it contain many eos. That's why its very important to take multiple biopsies.  It is also important to mention that people with extreme reflux or GERD can have low numbers of eos in their distal (bottom) part of the esophagus.  Given that Lexi had such a high number at the top of her esophagus the second time around, would indicate things were likely not improving for Lexi.  She was also on strong reflux medication (Prevacid) thus, her elevated eos numbers were likely not caused by reflux.  Our GI advised us to give Flovent more time.

We had a follow-up appointment with GI in September 2010.  Lexi was still symptomatic at this point.  Lexi had been on Flovent for 2 months with little to no improvement.  That's when the Elimination Diet officially started.

Allergy Testing

Patch testing 8/2010
It's not uncommon for newly diagnosed EoE patients to under go allergy testing.  As mentioned in my introductory post, it's not always accurate in detecting EoE trigger foods.  EoE is often quite delayed in symptoms and allergy testing mainly tests for mediated allergies (IgE).  Interestingly enough, a large percentage of people with EoE (about 50%, I think) also have IgE mediated allergies, asthma, and/or eczema.  Lexi has eczema and one mediated allergy: garlic.  Despite the fact that it can be inaccurate, I think allergy testing is still an important step to take.  Reason being is this: if a patient with EoE has undetected IgE mediated allergies, it could become all the more difficult to detect the delayed EoE triggers.  Thus, making the water even muddier.    There is a delayed response form of allergy testing called Patch Testing.  I find the results to also be inaccurate in detecting EoE triggers.  Let me put it you this way, if there was a stock in using allergy testing for finding EoE triggers, I would NOT put my money in it!  

Negative patch test results

And what was the consensus of Lexi's allergy testing??  All were negative, except for garlic, which was even questionable.  Lexi was skin pricked twice, (for food and environmental allergens) and patch tested once.  So far we know of at least 4 trigger foods for Lexi: apples, corn, peas, and most recently: chicken. Lexi was tested for all these foods, at least twice, and apples three times.   I will get into how we figured this out in Treatment Part 2 post.

***Please take into consideration that I am not a doctor nor a medical professional.  Everything that I have written is in the form of an editorial, personal opinion, and from my first-hand experience.  If you, or someone you know has EoE or another EGID, please consult a medical professional before changing, stopping, or starting a new treatment :)***

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About Me

Maine, United States
My name is Megan, and I am the wife to my wonderful husband, Peter of 9 years, and Mother to three beautiful children: Abby (7), Lexi (4), and Judah (2). My youngest daughter, Lexi was diagnosed with a rare and chronic gastrointestinal disease called Eosinophilic Esophagitis (EoE) in July of 2010. EoE occurs when a white blood cell called an eosinophil (eos) see specific foods as parasites. In turn, the eos attack Lexi's esophagus. This causes an array of symptoms including sickness and pain. To date, Lexi has only 8 safe foods and requires supplemental nutrition with a hypoallergenic formula through a g-tube in her stomach. Due to Lexi's limited diet, I've developed a few allergy-friendly foods which can be found on the recipe page, along with some of our favorite allergy-friendly products. There is also information regarding Lexi's path to a diagnosis, treatments, allergy testing, food trials, and more. EoE can be tough, but you know there are others out there who struggle in the battle against food, it can make it that much easier to keep pushing through.