Welcome to Winning Against Eosinophilic Esophagitis

I wanted to start this blog to share with people the challenges families face when a child suffers from the condition called Eosinophilic Esophagitis. I didn’t know anything about food allergies or eosinophilic esophagitis (EE) prior to my son being born in 2004. Since this all began, we’ve been through so much. In my desperation and search for information and support I have read so many other stories about children with EE. Some of those stories brought me to tears and have made me truly grateful that our situation is what it is, and not any worse. My heart goes out to all the families dealing with EE and food allergies, no matter how little or how much it affects you. I’m hoping that by sharing our story more people will become aware of this condition, and that it might help some families get some support or answers. I know for a long time we didn’t even know what was going on, but now we have a diagnosis that we can work with. I hope that we all lead a winning battle against this life changing condition.

To read about our story, scroll down toward the bottom of this page.

Thursday, February 28, 2008

Patch Testing on Children with Eosinophilic Esophagatis

We went through our first round of allergy patch testing this month. Before we scheduled the appointments I looked for information about it in regards to children and why it's done. I couldn't find very much at all and was quite frustrated. I was also frustrated because the staff at the office, or at least the person I spoke with was not able to answer my questions without playing relay to someone else. She shouldn't have been on the phone telling us what to do if she couldn't answer my questions. For example, we were told to bring jars of babyfood for them to put on my son's back. The meat products are not pure, they have corn startch. My son has tested allergic to corn previously, so I thought it would be wrong to use it because it would give false positive results. Question after question and we finally got it all sorted out. (By the way, they ended up asking the doctor and he said that the corn starch shouldn't pose a problem "because it's only the starch". I wonder why then I'm avoiding it in all his foods then??) Anyway....

In my research for information I found a lot of references to patch testing for contact dermatitis and the main things it tested for was metals and chemicals that irritate peoples skin over time. I was totally confused how this related to eosinophilic esophagitis. We were going to test for foods only, it turns out, despite the paperwork they mailed me. I did finally find ONE great letter from Dr. Jonathan Spergel from Children’s Hospital of Philadelphia on the APFED website ( http://www.apfed.org/faqs.htm Question #4) that explained in much greater detail about why we do patch testing and what it indicates in EE. Basically, scratch testing and patch testing examine different "systems". Scratch testing shows immediate reactions to foods, patch testing shows delayed reactions to foods. People who have delayed reactions to foods have a difficult time pinpointing the culprit foods. This test should help with that.

We had just done scratch testing in January and my son had tested negative for several things that he had tested positive to in the past. We were very excited that we might be able to return some foods to his diet. With the patch testing though, he still tested positive to most everything and a couple new things! And if you test positive on either test, that food is recommended to be removed from the diet. So back to square one. But I do believe in my heart that his body must be improving since he got over his wheat allergy according to both tests, and he is not testing "as positive" as in the past to other things, if there is such a thing. Allergy testing is so not cut and dry.

Our experience with the patch testing in general was very good. It only took about 15 min. to get all the little cups of food taped onto my son's back. He thought it was quite hysterical that he was wearing baby food on his back! He just turned four so they had a little difficulty finding room for five strips of food cups, but it all worked out. He wore those test strips for 48 hours. He didn't complain about any discomfort or itching or anything. I think he was most annoyed that I wouldn't let him play too hard and get sweaty! After 48 hours, the office removed the test strips and took the initial reading. It didn't look too bad at the time. I was able to see two spots that looked positive. More grew over the 24 hour period until the next reading. My son still had no complaints of itching or anything which was good. At the final reading though, he was covered in spots. He tested positive for quite a few things. It's now over two weeks later and he still has a spot where he tested positive for egg (his most serious allergy).

I hope this helps other parents who are wondering what to expect when taking their child in for patch testing, for EE or for allergies in general. I'm attaching some photos of my son's tests just to share.


FoodAllergyMom said...

I showed this to my 12 yr old and she started crying. She had the "prick test" done when she was 3 and was traumatized by it. The doctoer told her it would feel "like a caterpillar" crawling on her back. It didn't! I'm glad that your experience with the patches was a good one. Thank you for posting the pictures, I think it does make it a lot easier when you know what to expect.

Tracy said...

I'm sorry to hear about your daughter's experience. My son had his first scratch test done when he was about 2 1/2 and he thought it tickled, especially the drawing on his back. I guess everyone has different tolerance levels. Plus, he was younger. I'm told my son is not typical in terms of medical things... he's had his blood drawn so many times and watches them make several attempts to get the blood to come out, poking and wiggling the needle. He has cried once, a tiny bit. He's a real trooper. We've been lucky. That said, I think he did well on this test and that most kids would also do well, considering there was no poking or scratching of any kind. The tape removal was the worst part! And even that wasn't bad.

kfitz said...

I am 22 years old and have been diagnosed with EE after over 3 years of testing. I have not been able to properly identify my food allergies and still continue to have problems. I live in Florida and the only allergy testing I have received is the RAST test and the skin scratch test. I have been collecting my own information about the patch test and would like to get information on where it is available in the US. If you have any information you could provide me, it would be greatly appreciated! I am so happy to hear that your son has found some answers. I just had an emergency endoscopy two days ago because I was losing rapid weight and had a food impaction. I continue to fight nausea and vomiting on a regular basis and I am ready for some answers.

Thank you,


Tracy said...

Katie, interestingly enough, my 37 yo. sister was just diagnosed with EE about two weeks ago. This is after several years of issues. Finally, a scope showed what was going on. She was sent to a dietician and was just going to eliminate the big 6 allergens. The dietician told her to be allergy tested before starting the diet just to make sure that it was in line with things. She ended up being allergic to a bunch of other things, even strange things, and the diet likely would not have given her complete relief. She only had scratch testing done.

I have no information on who does or where to get patch testing. Our allergist said they just started doing it and getting decent results. Have you asked the allergist who did your scratch testing? I would suggest going to www.apfed.org to see if you can find any information specific to specialists in FL. Take care of yourself.

Our Story

My son Jason was born January 17, 2004. He was a very easy baby. His only issue was that he spit up like crazy and lots of it. The doctor was never concerned because he was gaining weight just fine. He was my first baby so I just thought it was normal. In fact, he was a chubby little baby. He also had eczma but no concern there either because it didn’t seem to bother him and it’s pretty common.

At his 12 month doctor visit they drew some blood for some standard tests including things like lead and iron. Our pediatrician called though concerned about a very high level of eosinophils in his blood. She told me these typically indicate some sort of allergy. We did some further RAST testing (blood tests) to see if he might have any allergies and then we visited with the allergist. He wasn’t much concerned because all the testing doesn’t mean anything if there are no outward signs to back it up. He did score high for egg allergy and some others also showed up. He recommended we avoid egg and peas (peas was the one thing that started to cause him to break out in small hives where they touched).

Interestingly enough, for his first birthday we had some friends over and he ate birthday cake. Shortly thereafter he vomited and it was a big fiasco and my friend had to show me how to use my portable rug scrubber. It was a memorable day! But looking back now, he most likely had an allergic reaction to egg in the birthday cake.

Despite the removal of egg from his diet, he continued to “spit up”. Though now that he wasn’t a baby, it was more that he was vomiting. But visits to the doctor’s office came back with discussions about a very sensitive gag reflex, and possible reflux.

As time went on it got worse. We carried a barf bucket along with us everywhere we went because it would happen without warning. It wasn’t always after he ate. Zantac wasn’t doing anything to help the situation. He was eventually throwing up 2-3 times a day without any rhyme or reason. It was utterly exhausting to always be on edge. Any time he coughed we would run through the house to grab a bucket and try to catch it. There were several bedtimes that ended up with messy sheets, midnight baths and lots of tears. He cried every time he threw up and he didn’t want to do it anymore. He also wore a plastic bib for meals no matter what because in the middle of his meal sometimes it would come right back up, hardly chewed and definitely not digested. I don’t even know that it was making it down his esophagus. This is all pretty gross, I know, but it all makes complete sense now.

In September 2006 I happened to find some other mom on a message board who said “sounds like my son’s symptoms… have you checked for eosinophilic esophagitis?” I checked out what little information I could find about it and it seemed to fit Jason’s symptoms right on. I took him back to the pediatrician and told her that something is definitely not right and that I wanted to see a Gastroenterologist asap and to discuss eosinophilic esophagitis (EE). We saw the GI very quickly and scheduled an upper endoscopy to do a biopsy, the only way to identify for sure if the condition is EE or not. The results were good and bad at the same time. Yes, indeed he did have eosinophils in his esophagus indicating he had EE. We were sad, but at the same time, we were just finally so relieved to get an answer as to why he was throwing up constantly. He was on Zantac and swallowing Qvar daily to help manage the condition, but they truly didn’t make any difference.

We were referred to an allergist again. On October 17, 2006 he had some scratch testing done on his back. He showed allergic reactions to a long list of things. We were sent home with list of things to avoid. We were in tears over how we would manage to eat while avoiding eggs, chicken, turkey, wheat, corn, soy, nuts, peanuts and peas. And we were sad that he wouldn’t get to experience food like the average kid. I went through our kitchen cabinets reading every single label and getting terribly frustrated because our food is laden with these products. However…

Amazingly, my son didn’t throw up a single day after we changed his diet! We were so completely happy. Seeing him be so much more healthy was all the inspiration we needed to seek out other food options and to make this work. He had another biopsy on January 16, 2007 which showed he was 100% clear! Again, we were terribly excited that the restricted diet worked. We would continue on that diet for quite some time longer. We had periodic check ins with the GI and the Allergist. Lucky for Jason, his blood eosinophils seems to be related to his condition. I’m told that not all people can be followed with blood testing to see how they’re doing. But in his case, we could see that his blood eosinophils had gone way down.

In March 2007 he came down with a cold that left him broken out in hives and throwing up. I had not heard of cold viruses giving people hives before, until then. But as soon as the cold passed, so did the hives and the occasional vomiting. His blood had tested a higher level of eosinophils which then went back down after this viral episode.

And again, not a single symptom of his EE since we had changed his diet. We continued with this diet for over a year. His medicines changed a bit… Cimetidine, swallowing Flovent, taking Zyrtec for seasonal allergies, and iron supplements. But all in all, things were 99% good. There was just that lingering small amount of eosinophils in his blood.

In January of 2008 he underwent a repeat of the scratch testing. He now showed negative for a lot of things he had previously shown positive for! We were so excited that we might be able to reintroduce some foods back into his diet. But the doctor wanted to do patch testing to confirm the allergies.

In February 2008 we did the patch testing only to find that he showed positive to many foods still. In fact, he showed positive to milk which we hadn’t been avoiding in the past.
I came home half in tears again. Instead of adding things back in, we were now removing more items. Actually, we got to put wheat back in (that’s a biggie), but we had to remove milk and barley (which is in a lot of wheat products). It was hard to tell him that he could no longer have ice cream, cheese and butter. But actually, he seems to be taking it better than us!

So far we’re managing. It’s so difficult when someone is allergic to milk AND soy. And it’s so difficult with such a long list because there is usually at least one thing in everything that he can’t have. And corn… don’t get me started with corn and corn syrup being in everything!

I hope to someday deliver a happy ending to this story. Until then, we continue the battle!