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.

Saturday, December 20, 2008

Complimentary Treatments

Based on the research and reading I've been doing of late, I'm deciding to break out and try some alternative things with Jason.

The first thing we've just begun is EFT (Emotional Freedom Technique) which is tapping of the meridian points of the body to help balance his energy to help him heal. I've been using it on myself and am quite amazed by the little things I've seen already. I've made some new friends in the world of EFT, and one in particular has been wonderful enough to get me started in the right direction. Coincidentally, she has a child who's been through a very similar experience to Jason's and he's now a thriving teenager. I have nothing to lose and only everything to gain, so I'm going with it!

The other things I'm planning on doing is introducing digestive enzymes and weaning him from his Cimetidine (Tagamet). Long long ago, Jason was put on Zantac to see if that would make the vomitting stop. It didn't. Neither did the swallowed steroids given at that time. The only thing that made a difference was changing his diet. Some time later he was switched to Cimetidine (from the Zantac) and then I had even asked if he could stop taking it because it doesn't seem to make a difference anyway. I was told "just have him keep taking it... it won't hurt anything." Well, I'm now thinking that it might be hindering some things indeed. It's been known to cause certain vitamins/minerals to not be absorbed as well as they should, iron being one of them. Hmmmm... that's funny because Jason always tests low for iron and has been on an iron supplement for a very long time. He's always just under the cut-off to normal. I wonder if weaning him off the unnecessary Cimetidine would help improve the iron issue as well. In addition to that, I would like to introduce him to digestive enzymes. Another new friend had recommended this option. So I researched it like crazy and it sounds like it would be very beneficial to Jason's health. One very helpful website I found was http://www.enzymestuff.com/ . I am going to make my purchase and call the GI to keep her informed that this is what we want to do. I only hope she agrees without giving me any issue about it. I'll have to keep you posted.

Until then! We'll be busy enjoying the holidays and not thinking about all this crazy health stuff!
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November & December 2008 Appointments

I just thought I should check in and let everyone know what we're doing these days, or not doing. Mostly, we're just getting ready for Christmas and the kids are so excited!

In regards to Jason... we went to visit the GI doctor in November. Jason wanted to know "why am I going to the doctor if I'm not sick?" Good question kiddo! "Just to say hello to the doctor and to let her know we're doing great." So, we popped in for a regular follow-up visit and a lab slip to get the usual blood check. While we were there, she gave us a couple sample boxes of EO28 Splash, a fruit flavored formula to help supplement the diet of those who can't a great deal of things. Jason was so excited to try them. With both flavors he said "I really like this" with that contradictory facial expression. And by the third sip or so, he admitted he didn't like it at all. At least he tried. I think the GI was just wanting to help find ways to get more nutrition into Jason's diet, not that he's having any issues growing or staying healthy.

Then, earlier this month we visited the nutritionist in the same office. The GI said the nutritionist would be able to help us make sure that Jason is meeting his nutritional needs and help find alternative foods and supplements. Well, let me just say, that was a wasted appointment. I was told I needed to bring Jason along, who just sat there bored the entire time until he stated that he wanted to leave, which he has never done at any appointment, ever. And instead of learning about how much of the various nutrients Jason needs, she played doctor and was telling us that we shouldn't be feeding him the foods that the Allergist approved, and that this is an uphill battle, that it's a lifelong thing, that he'll never heal and get better if we don't remove him from food, blah blah blah. I got pretty upset by the end of the appointment and wanted to leave quickly as well! Oh, she did tell me that he needs to get 800mg a day of Calcium. Geez, I could have found that on the internet. And she gave me a handful of alternative food sources such as seaweed... Yeah, well, I tried sweet potatoes the other day and he wouldn't eat them. Not only is his diet currently restricted, but he's being picky as well. The nutritionist gave us a can of Neocate to add to smoothies which is something I plan to try.

Anyway, I had to call the GI and talk to her because I was totally confused at this point. Am I doing him more harm than good? The GI told me to follow the instructions of the Allergist and her and that Jason will be fine, as he was in the past with their treatments. So, I felt a bit better, but I'm not one to just sit and wait for things to happen. She doesn't plan to rescope and biopsy him until summer! That'll be amost a year from the last one. And in the meantime we're just rescricting foods, giving meds and sitting here waiting!

I will tell you what my plan of attack is at this point in time on the next post....
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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!