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.

Sunday, March 9, 2008

Our Current Treatments for Eosinophilic Esophagitis

I thought I should share how we are currently treating my son's case of Eosinophilic Esophagitis. I know there is no set treatment and most of it is still experimental. There is currently no known cure for this condition.

Before he was diagnosed with EE, he was on Zantac, a medicine usually given to people with reflux. It didn't improve his daily vomitting at all.

In September 2006 when he was finally diagnosed they said to continue the Zantac to help his stomach, but also put him on Qvar, a steroid inhaler. He was to swallow this medicine, not inhale it like it's usually taken. The steroid is supposed to reduce any swelling in the tissues of the esophagus caused by the eosinophils.

When we switched insurance we had to find new doctors. They then changed his stomach medicine to Cimetidine which also has a histamine blocker. He was also switched from Qvar to Flovent, the more commonly used steroid to treat EE. Again, he has to swallow this, not inhale it.

All these medicines didn't seem to do a single thing though. The one thing that made a HUGE improvement in his health was eliminating a long list of foods. On October 17, 2006 he had scratch testing done for the most common foods. He tested positive to many of them. That very day we eliminated the following from his diet: eggs, chicken (all poultry), wheat, corn, soy, peanuts, tree nuts, and peas. He didn't throw up again since that day. That's why that date sticks in my mind so strongly. My money is on the food eliminations at the winning "treatment", if you can call it that. It's more about avoiding than treating, and not fun, but it's working for now. We're grateful that he is no longer getting sick several times a day.

He continues to take Cimetidine twice a day. He is also down to taking the Flovent only once a day. Interesting to note, he had a strong reaction to a cold virus in the spring of 2007 that caused incredibly large hives on his body and a few bouts of vomitting, but nothing like in the past. Once the cold passed, everything cleared up and we reduced his Flovent again back to once a day. He is also taking Zyrtec every day and is on an iron supplement.

We continue the meds and the restrictive diet. The diet has changed a bit. We're now also eliminating milk and barley. BUT, we have been able to add back wheat! I'm crossing my fingers that we can eventually eliminate the medicines since in my opinion, I can't see that they're making any improvement. And I also hope that he outgrows the need to eliminate some of the foods currently on his "do not eat" list.

I consider us lucky. Even though we're on meds daily and have a very long list of things he can't eat, we try to stay positive and talk about all the things he CAN eat. I know there are many children with this condition who can't eat a single thing. I simply can't imagine how challenging that must be. My son is strong and he is dealing well with the food elimination in my opinion. And if you looked at him, you wouldn't know he has any kind of health problems. He is a very handsome, smart and charming young man. I love him dearly!

2 comments:

Lisa said...

Hi Tracey! I have a 16 month old that was diagnosed with EE when she was 12 months old, and we are trying to get her into Cincinnati Children's for better treatment. It has been an exhausting process as I am sure it is for you. Good luck with the blog and keep up the hard work!

anshu said...

Hi,

My son is also suffering from eosinophilia.I want to know that what we should give him to eat?

Thanks in advance.

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!