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.

Tuesday, May 13, 2008

Eosinophilic Esophagitis Support Group

I recently joined up with a Yahoo group and APFED to meet other families dealing with EE. Both have started local support groups! So last Saturday my son and I drove up to San Francisco to meet some other families.

It was a really nice experience. There was an excellent GI at the meeting who volunteered her time to help give us some answers, Dr. Christine Nguyen. We got to meet other families and hear their stories of delayed diagnosis and mis-diagnosis. Very frustrating. We discussed things we've been told, things we've tried, things we plan to try, etc. We're all doing our best to gather information and figure this our for our kids. We also talked about how our kids are managing despite their challenges. I can't imagine being as happy and well adjusted not being able to eat food(s) like some of these kids. All of the kids there were wonderful!

The other benefit is that the kids got to meet others that have similar issues. I know my son was excited to go to the meeting because he wanted to talk to the other kids about all the allergies he has. Finally someone who would understand what he's talking about. Other kids just kind of look at him and have no clue what he's talking about. But in the end, I don't think the kids sat and talked about their health. Instead, they played together and had a fun time. It just goes to show that they're really truly just kids and just want to have fun.

We look forward to the next meeting and continuing our relationship with our new friends.


Debby said...

So glad to read your story...Our daughter, Stephanie was much like your son...very healthy, even chubby baby, born in 2005. She ate everything~!!! However, by the age of 3 we still couldn't get her potty trained because her bowel movements were so runny. Constant blow-outs!!! UGH! Thinking back on her first 3 years we also realized that she threw up more than most kids. She'd cough and get sick, get mad and get sick, etc. So we went to GI specialist. Coming out of her scope the GI said, "look at all of that furrowing on her throat. We took biopsies and I think that she has EE. We'll know more in a week when we get the results". Well, she called back a week later and yes, Steph has EE. that was sort of "the end of it". Not much more was said at that time. When talking to a friend at church, who's son had some disease we could never remember, Chrissy said, "OMG, that's what Peter has!" We made lots of visits with our friends to learn more about the disease. A year later I still don't feel like I understand it. Steph, according to RAST is allergic to egg and milk, but it doesn't show on patch testing. We are active in our support group, but haven't gone to Cincinnati Clinic like most of them have. We are now working with a new GI/Allery & Immunologist who is studying EE. Love Dr. Maya in Buffalo. We are currently waiting a return visit to get results from Steph's scope and PH probe testing a few weeks ago.
I really don't get on chats or anything, b/c 1. I don't have time, 2. Steph seems so "normal" as oppossed to other kids I read about with an extensive list of food allergies. Sometimes it doesn't seem like she "fits the profile", but I am learning that EE is everchanging and doesn't have to look just one way. Thanks for your story and letting me get mine out!


Hi! My name is Nancy and I have a 6 month old that was diagnosed with Eosinophilic Esophagitis. We did the usual switching to at least 4 formulas in the beginning and no one knew why nothing was working. Dr put her on axid and zantac and nothing worked. She just cried all day. It was heart wrenching. At 8 weeks we took her to upper GI and by 10 weeks they did an and endoscopy and a reflective sigmondoscopy. They found 27 of the Eosinophilic cells in her esophagus and they also saw it present in her colon. Meanwhile before that were in the ER with her not knowing why she wouldn't stop crying. They immediately put her on prilosec which is such a pain to give her bc she hates the taste and she's on ele care formula. She seemed to of been getting better but obviously was behind physically and her body was so stiff. She seemed to have some sensory issues going on as well. I had the state evaluate her and she qualified for feeding therapy but was denied PT/OT bc she was so young and the margin was so broad. They told me to have her retested at 6 months and in teh process now. I ended up in Dec taking her to neurologist bc that was one of their recommendations to rule out any other issues and she's fine. However the Dr did diagnosed her with hypertonia and now she's in PT 2 times a week. Things seemed to be ok after that until late January, she's was sleeping through the night and seemed very happy.
Then late Jan she was diagnosed with a double ear infection and after it cleared up she remained with a low grade fever (100-100.6) It wouldn't go away and no one knew why. She started projectile vomiting , waking in the night crying, diarrhea and had a loss of appetite. We were send to ER bc her Dr had no idea bc she looked fine when he checked her. They ran blood and urine tests and everything was fine. We were sent home and told to see an infectious disease Dr. He also is baffled. He ran more tests and nothing. It seen so frustrating.
One day at teh end of Feb I go to the pharmacy to pick up her monthly dose of prilosec and when I get home I noticed that both the new and old medicines were 2 different colors.(one white and one yellow) I call the pharmacist and he reassures me that it bc the capsules come in different colors at times. In the next breathe he tells me that the prilosec has to be refrigerated. I said, "WHAT? I never read that on the bottle. There was never a sticker nor did anyone tell me when I picked up the medicine!" He seemed flustered as we ended our conversation. I later find out that it looses its ability to work after 2 weeks of being left out. So now my daughter has been reacting do to medicine that hasn't been working. I just sobbed. My poor baby has been through so much. She going to get re scoped at the end of this month and I have a sick feeling her esophagus is going to be more damaged. She's not on any solids bc the allergist wants to wait to see how she is and then start her on a modified feeding program. I have no support here bc I know no one with this. She just completed some patch allergy testing. So far she's allergic to a bunch of foods. She still has the low grade fever. Im forever at the dr. If ts upper GI, allergist, infectious disease, primary and PT. Im trying to educate myself and him on this. It tough. I just dont understand why she isnt sleeping through the night any more. Thanks so much for listening and i really do need some support.


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!