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, April 17, 2008

Mystery Setback

Just when we thought things were going great.... another question pops up from this mystery illness.

Jason has not been sick in over a year since we restricted his diet and put him on medications. His last biopsy was clear in January 2007 and his blood eosinophil levels have been low and decreasing.

Then today... we got the results of his blood test from this week. It was to see if the additional elimination of milk and barley was the key to getting his eosinophils to within normal limits.

Nope! His eos were very high... in fact, higher than when he was one year old when this all started and his eosinophils were 24%!! Quite frankly, I'm amazed he hasn't shown any outward symptoms such as vomitting and regurgitating while eating.

So why have his blood eos jumped way up??? It has to be one of three things, or maybe a combination of them. 1 - We reintroduced wheat back into his diet based on the fact that he recently tested negative for wheat allergy on both the scratch test and the patch test. He has been eating wheat for 3 months now without any adverse reactions. 2 - Seasonal allergies. Despite taking 1 1/2 tsp of Zyrtec a day he has been suffering major sniffles and red eyes. He has tested for environmental allergies, but there isn't a whole lot you can do about them. 3 - He has some of his sister's special egg free, milk free, corn free, etc. birthday cake. We let him have a little bit of the frosting which did have corn syrup and corn starch in it. Now, we have let him have a little bit of corn syrup and corn starch (in sprinkles or M&M's) in the past and his blood eos have been low. So, we're not 100% sure that's what did it this time.

We are waiting to hear back from the allergist as to what the plan is. Until then, I'm going to be on the look out for any outward signs of problems. I'm crossing my fingers that this is indeed a seasonal allergy issue and that the poor kid can continue to eat wheat. Otherwise, on to more food eliminations.

Monday, April 14, 2008

Doctor Communication Issues for Eosinophilic Esophagitis Management

I'm getting a bit frustrated with the lack of communication betwen my doctors. We see a GI and and Allergist and our Pediatrician. Our last pediatrician didn't give two hoots about my son's Eosinophilic Esophagitis. He also had some other major downfalls and he is no longer our pediatrician. We now have a great Ped that we love. He is listening and learning about EE.

The real issue is between the GI and the Allergist. They are both good, both highly recommended, and they know of each other. We saw the allergist in Jan. and Feb. of this year for testing and consultations. He said he was going to contact the GI and discuss our case with her and would get back to me. I waited, ended up calling and was told he was out of town and had our chart. (Hopefully at some big EE convention learning??) Anyway, still haven't heard anything from him.

Today we went for a routine visit to the GI and she said she had received a letter with the allergy testing results, but that was about it. She had not talked to him. She said she would contact him herself.

They are good about sharing test results and such, with a little help from me (reminding them to have copies of lab results sent to everyone, etc.), but some things seem to need some one-on-one conversation. I was asked if the allergist was planning to take my son off of the flovent? I don't know. She would like to rescope him after that, or if we're not going off of it, then now would be good. They really should talk and put together a treatment plan.

I know as the mother of the patient, I'm ultimately responsible for seeing that things get done. But I don't like being told that things will happen and then they don't.

How are the rest of you handling the multiple appointments with various doctors and the communication between them?

Saturday, April 12, 2008

Questions About the Future

The other night I laid in bed thinking about the future for my son. We've actually been managing pretty well. I did however recently decide to join American Partnership for Eosinophilic Disorders (APFED) in hopes of meeting other parents and families dealing with similar issues. I also signed up with another group of people dealing with EE and other eosinophilic disorders. What I got was overwhelmed. What I read about was all the issues other people were dealing with and the questions they had that didn't have answers, and the lack of expertise with these conditions. I was doing OK, and now I have a lot more questions, or rather concerns about what the future holds.

  • Will my son's condition get better, worse, or stay the same?
  • The disease has only been diagnosed, treated and studied for the past 10 years.
  • No one is certain of the pronosis long term.
  • There is no cure at this time.
  • Treatment is pretty experimental with drugs or extreme in that some children are taken off of all foods and fed a special formula, some through a feeding tube and if they're lucky, they can resume eating a handful of foods as they try each one and see how their body responds.
  • No one knows why it happens in the first place. How much research is actually going on about this?
  • Many medical professionals have never even heard of these eosinophilic disorders. I've read about how some parents are told they have no idea what they're talking about or laughed at by doctors when they do what they can to fight with not much more to go on than their gut instinct. Why aren't medical professionals updated on these illnesses?
  • How will my son manage his treatment once he starts school? Will he somehow be pegged as different because of it?
  • I read so many people talk about their teenager being diagnosed, or their second child being diagnosed later in life than their first child, or whatever the scenario. So, just because my daughter seems to be perfectly healthy now and has zero symptoms of this condition, it doesn't mean that she won't still come down with it in the future??? There is apparently a 50/50 chance she could also have it.

There are just so many unknowns about all of this. It can keep a person up at night wondering and worrying. I truly hope that more people become aware of these eosinophilic conditions, that funding is given to better study them, that treatments that work can be found, and that doctors all get educated appropriately so as to help those of us who look to them for answers.

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!