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, June 14, 2009

Is this Goodbye?

I'm at a crossroads with this blog. I have rewritten this entry numerous times and have delayed sending it out, but I think I better do it soon. I don't want to abandon anyone, but here's the situation...

I am reading more and more about energy healing, how our DNA does not determine our health, how our thoughts affect our health and everything else we bring into our lives (or block from coming into our lives). I've been reading extensively about Law of Attraction, reading and learning energy healing techniques such as EFT, and have joined the Global Coherence Initiative which focuses on people coming together to promote health and well-being for ourselves, our families and friends, as well as the planet as a whole.

There is just SO much more out there than medical doctors who practice based on old science and make educated guesses on cures, and give people life ending diagnoses because they do not know or are not opened to the realm beyond regular medicine. They tell people they have 2 months to live, and people die 2 months later because they completely believe the authority of a doctor. Sometimes only to find that it was an incorrect diagnosis! Why do we put so much faith into doctors? They have good intentions, I do not discount them entirely, but we put too much faith into them.

Law of Attraction says that everything you think, everything you imagine in your mind, everything you talk about with people, everything you feel in your heart will manifest in your life. What you think/feel becomes reality. You pick... illness, or wellness.

Here's the biggest example of this in relation to my son's dis-ease. We got the diagnosis, we changed the diet, we got a clean scope, we went about life as usual and were happy and healthy. I one day I felt that I should be a good mother and seek out more information about it. I joined some support groups, got bombarded with terrible stories of worst case scenarios several times a day, was told outright that even though he seemed to be doing ok today, most likely, his health will go down the tubes any day, and fast. That there is definitely no cure and this will be our lives, forever. At our next scope, guess what? It was terrible! I'm sure that my talking about EE and how terrible others have it, and how it's incurable, and crying about it, etc. was picked up by Jason, and he then proceeded to internalize it and make it real. Since that day we have made some changes. I have turned off ALL notifications from support groups. I have declined all invitations to attend meetings. I am sure to tell the doctor to talk about things only with a positive spin. (I would love it if I didn't even have to bring Jason into the room to see the doctor, but of course, she needs to see him.) We don't ever talk about EE at home. We avoid it as much as possible except for when it's simply not avoidable. And guess what? We're doing MUCH better! We talk about health, and how wonderful it's going to be to eat various foods again. He feels healthy every day. I feel hopeful that this will go away. The only times I feel pulled back into the EE world is when I get emails about this blog, or a stray email about EE for something or we need to figure out how to handle a situation that involves food at a party or something, or we have a visit with the GI or Allergist.

People everywhere are fighting against cancer, aids, war, etc. and all we're getting is more of it! Fighting against EE is no different. Awareness of this dis-ease is growing, along with the increased number of cases. According to Law of Attraction, we cannot defeat what we do not want by focusing on it. Anything we give focus on, we get more of.

So here is my dilemma... this blog brings EE more into my awareness, and yours. I know for some, it helps you to feel that they're not alone. I can appreciate that. But I can only focus on what's best for myself and my family. I no longer want to hear the "truth" of others and then make it ours. I wish to focus on health and well-being and make that our truth, despite the collective agreement by others to label symptoms into illnesses and then call them incurable.

Here are some other thoughts on this:
  • We resist wellness by focusing on illness
  • Attention to what you do not want is what creates it and holds it in our experience
  • Any thoughts about illness are unproductive

Instead we should be thinking about:

  • Perfect wellness is our normal state
  • Stop fighting illness and relax into our wellness
  • For every moment we focus on anything other than our illness, we become wellness
  • The only way to help others be well is to live well ourselves and be an example
  • Giving our attention to wellness brings us wellness

So basically, this blog is a focus on our illness. It's something that gives me negative feelings when I write about it, talk about it or hear about more cases about it. It keeps our attention to what we no longer want. It's counterproductive to where we want to be, healthy and eating whatever we choose! And therefore, we need to let it go.

I am considering no longer posting to this blog, and possibly turn it off completely in due time. I just wanted to give everyone a heads up. I started this blog on a complete whim one day and never expected it to reach as many people as it has. I appreciate the people who are following us and hope that you can find answers and peace and excellent health in your lives.

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!