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, February 26, 2009

February GI Visit - All is good

We went to visit the GI again today.... just the usual "I feel fine, why do I have to always come see you?" kind of visit! Jason did just come down with his first ear infection at age 5 and is on antibiotics for that, but otherwise, he's doing fine.

We talked to his GI about the newly introduced digestive enzymes, and she was supportive of that. She said they certainly wouldn't hurt anything, especially if they're just your regular non-prescription enzymes. She also supports the probiotics we introduced last summer. As well, she's good with us trying to find better vitamin and mineral supplements that are hypoallergenic.

Iron is still borderline almost normal, but not quite. That seems to be the case. So I asked her, being a Mom who reads up on things and has questions of my own, if we could take out the Cimetidine since it can cause absorption issues, especially with iron. She was all for that, so we'll take it out of his diet and see how he does. We're totally expecting him to be fine since they never made an improvement when they were first introduced 2.5 years ago! Perhaps that will help with his iron absorption. The other thing we were told to do to help with the iron is to give it with about 60 mg of Vitamin C per 0.6 ml of the ferrous sulfate. Crossing our fingers that this all works and then we can at least eliminate an unnecessary drug and the iron supplements. That would mean we'd be down to the Zyrtec and the Flovent along with regular enzymes, probiotics and vitamins/minerals. Oh yeah, and that peky restricted diet.

No scope until the summer if all goes well with the removal of the Cimetidine. And I doubt we'll revisit with the allergist until after the next scope, so that means we wouldn't be re-introducing foods into his diet any time soon.

That's the hardest part for us (me), is wondering how he's doing on the inside. He looks and feels great on the outside! I guess I should not get ahead of myself. But instead be super grateful (and I am SUPER grateful) that he feels great every day and is growing and thriving just perfectly. And when the time is right, we'll add some foods back into his diet. He's managing pretty darned good considering what he's not currently eating!

We are also continuing EFT treatment to help improve health, remove allergies, and let go of any underlying issues that might be contributing to this condition. For example, the other day I said that we want to get rid of some of his medicines... he said "I don't want to get rid of my Flovent spray!!!" Why??? Only he can really know. Perhaps it makes him feel important, special, or something. Yet, he's been asking a lot to eat chicken and other things. So hopefully he'll realize that eating chicken, etc. is more fun than having an inhaler!

And onward we continue!

2 comments:

Samantha said...

Tracy,

My name is Samantha and I have a five year old daughter named Piper who has severe EE.Over the course of the last 10 months she has cascaded into extremes. Over the course of the last ten months she has gone from a child who we thought could eat anything to a child completely restricted from Milk, Soy, Egg, Wheat, Corn, All Nuts, Fish and Seafood. Piper has had 6 surgeries since July 2008 ranging from EDG-Colonoscopies to gastronomy tube placements and replacements and change outs, she has had NG tubes and so much more. In July her Eos were numbering 53 per high powered field. In October she went to a complete diet of Neocate Jr. and nothing else! As of current her body has undergone so much stress that we are now battling a new heart condition brought on by the stress of the EE, she has developed neurological disfunction that impacts her hearing, eyesight and speech due to her continued hightened pain levels and the doctors now believe that she has colitus as well as Allergic enteropathy in addition to the EE.

The amazing part is that my daughter never complains, rarely cries except for when the pain is tearing her apart and the medications aren't controling it. As of yesterday she is up to 15 medications taken one to three times daily.

My daughter and her strength amaze me and she is truly my hero. I am currently trying to get my ducks in a row to form a local support group as well as put together a fund raiser for EE research and awareness.

Thank you for your blog and sharing your story...it means the world to those of us who need to know we are not alone.

Samantha Strickland
Boise, ID
SKSPhotography@gmail.com

Three Amazing Kids said...

Thank you for sharing your story. I have a little boy with and eos disorder too. It is hard!

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!