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.

Monday, August 25, 2008

Scope Results

We did do that upper endoscopy last Tuesday. The procedure went well, the results were not good though. The visuals of his esophagus were quite bad. The biopsy results a couple days later confirmed that the Eos had returned to his esophagus in quite large numbers. Funny thing is, he has had ZERO symptoms or complaints or anything.

We increased his Flovent and made an appt. with the allergist. The Flovent is great at calming them darned eos, but some consider it as "masking" as it doesn't cure anything and once you go off of it, they can come back. Plus, long term Flovent isn't recommended due to the side effects.

We spoke with the Allergist today. We are removing wheat from his diet again. Poor kid. He's so bummed. Even though he had tested negative to wheat recently, perhaps it was a false negative and is the main culprit in the returning Eos. We are also making plans to do additional skin prick testing to see if there might be some other things we are missing. I'm compiling a list of ingredients I typically feed him, including spices such as garlic and oregano, etc.

What about environmental allergens causing this? The GI says it's controversial since the EE usually goes away on a non-food diet, pointing to food being the culprit. The Allergist says that in his field, there is no controversy, environmental allergies can definitely contribute to EE. Jason has been suffering hayfever all spring and summer despite the large dose of daily Zyrtec.

What about Probiotics to help the immune system and the GI tract? Our GI says they're fine to add to the diet. Our Allergist also says there is no harm in trying. Though, there is no studies at this time relating Probiotics to reducing/eliminating EE. There are studies showing that probiotics given to pregnant mothers and infants can reduce the chances of the child developing allergies in the first place.

So, we keep plugging away. Back to the drawing board for some of my recipes, the big one being our pancakes! I can't just go back to the no wheat, no egg version because that had barley in it which we're also avoiding. I'll have to do some experimenting.

Thursday, August 14, 2008

Vote For EE - Raise Money for EE Research

There is still time to vote! Go to www.VoteForEE.com now. American Express is going to fund winning projects. We are hoping the Eosinophilic Esophagitis project can be the winner!

Take 2 minutes of your time to vote. You do NOT need to be an American Express card holder.

American Express is going to fund the winning projects with $2.5 million:

$1,500,000 for the winning project
$500,000 for the 2nd place project
$300,000 for the 3rd place project
$100,000 each for the two remaining finalist projects

The funding will be provided to the organizations that have been matched with the final five projects.

We thank you in advance for placing your vote at www.VoteForEE.com


Planning for Upper Endoscopy Next Week

At Jason's GI appointment last month she scheduled him for an upper endoscopy. I've been talking with the hospital and such getting the final details all smoothed out. What worries me most about this procedure is the need for general anesthesia to get into the esophagus and get pictures and biopsies. Children, anyone for that matter, shouldn't have to do something like this on a regular basis. Jason of course has been a trooper from the day we started poking and proding him looking for answers. He's a tough little guy. The hardest thing for him right now is that I've restricted his diet completely. No cheating with a little corn syrup here and there. Corn is one of his foods he's allergic to. But the allergist says he should be able to eat corn syrup because it shouldn't have that many proteins in it. If you look at the corn syrup industry, they say that yes, there is a little corn protein in it, but it shouldn't bother anyone. Though they don't understand that for some people even the smallest amount could put them in the hospital. We're lucky... Jason doesn't seem to be affected by corn syrup. However, I want to ensure a 100% clear scope next week! If it comes back showing eosinophils in his esophagus, I'll be completely stumped as to why, except for maybe wheat. So you can understand me wanting to make things as simple and understandable as possible. All Jason wants is a lollipop!

Detroit News Story about Eosinophilic Esophagitis

I'd like to share another news story with you about another child and her family dealing with Eosinophilic Esophagitis. I think that seeing the faces of the people affected by this condition will help to spread awareness and help people to understand that this is a very real affliction. I think it also helps to hear different peoples stories as not everyone got their diagnosis the same way.


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!