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, July 20, 2008

Great News - Medical Codes for EGIDs Approved

Below is a copy of the press release from APFED regarding the new medical codes for EGIDs. This is great news and a very big step forward. Prior to this we had no idea how many people suffered from this disease, ages, etc. It was not tracked properly because there was no coding. Now we can begin to collect this information and use it to help make the changes needed. We're so happy, yet there is still so much to do.


American Partnership for Eosinophilic Disorders
3419 Whispering Way Drive
Richmond, TX 77469
http://www.apfed.org/

For Immediate Release

Contact: Beth Mays, APFED President, 713-498-8216, beth@apfed.org

APFED Announces Approval of ICD9 codes for Eosinophilic Gastrointestinal Disorders

(July 15, 2008) APFED announced today that ICD-9-CM codes have been approved for
Eosinophilic Gastrointestinal Disorders, EGID, by the National Counsel for Health Statistics, NCHS. APFED submitted its proposal to the NCHS in September 2007 for four diseases: eosinophilic esophagitis, gastritis, gastroenteritis and colitis, all types of EGIDs. Thousands of patients suffer from these debilitating disorders; however until now they could not be coded correctly, making it difficult for medical professionals or researchers to determine how large a percentage of the population had these disorders.

The ICD-9-CM coding system is an international classification system which groups related diseases and procedures for the purpose of reporting statistical information. ICD- 9-CM codes provide a uniform language, and thereby serve as an effective means for reliable nationwide communication among physicians, patients, and third parties (QCMetrix.com). ICD-9-CM codes are necessary for billing, insurance and medical records, disease management, treatment advances, research and national statistics.

Even though suggestions for ICD-9-CM codes are normally not initiated by patient advocacy organizations, APFED, in keeping with its progressive mission to create awareness of EGID, felt the need to be at the forefront of these requests. Over the last two years, APFED worked with the Centers for Disease Control and Prevention’s Center for National Health Statistics to create unique ICD-9-CM diagnosis codes for EGID.

"Approval of these ICD-9-CM codes will permit accurate classification of these disorders and bring recognition of EGID to a new level", stated Beth Mays, APFED President and Founder.

NCHS has classified the following codes to designate the specific catagories of EGID:
530.13 Eosinophilic Esophagitis
535.7 Eosinophilic Gastritis
558.41 Eosinophilic Gastroenteritis
558.42 Eosinophilic Colitis

Eosinophilic Gastrointestinal Disorders, EGID, are distinct diseases affecting the gastrointestinal tract, which render the patient unable to tolerate food proteins. Recent demographic studies estimate that more than 1:2000 children live with eosinophilic esophagitis, in which only the esophagus, the tube connecting the mouth to stomach, is affected. Statistics on the adult population are currently unknown.

As the medical community becomes more aware of Eosinophilic Disorders, these numbers are expected to rise. Due to the lack of awareness among the medical community and the general public of these disorders, patients may wait 2 to 4 years to obtain an accurate diagnosis and receive proper treatment. More often than not, these disorders are misdiagnosed as other diseases.

Treatments for these disorders include total food elimination, requiring patients to live off an elemental formula which can be taken either orally or via a feeding tube; limited/restricted diets; and/or steroid treatments. There is currently no cure for EGID.

EGIDs are becoming increasingly common, with an incidence similar to household names such as Crohn’s and ulcerative colitis. Due to lack of accurate reporting, the true prevalence is not known, a problem APFED feels the new ICD-9-CM codes will solve. Unique codes are needed in order to allow researchers to track or identify patients with these disorders, develop new treatments, permit accurate reporting of EGIDs, and improve awareness.

APFED, a non-profit 501(c)3 volunteer-run patient advocacy organization, supports patients and families living with eosinophilic disorders.

For more information, please contact Beth Mays at 713-498-8216.

American Partnership for Eosinophilic Disorders (APFED) is a 501c3 non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED strives to expand education, create awareness, and support research while promoting advocacy among its members.
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Friday, July 18, 2008

Jason's Latest Blood Test Results

We have a little bit of an update to report. Three months ago Jason’s blood eosinophils were very high, unexpectedly since he was actually on a more restricted diet than in the past. Today we retested and I made sure we took him on a day that he wasn’t sniffling or sneezing from seasonal allergies. His blood eosinophils were normal! Yay!

He has been managing quite well on his current restricted diet. However, it’s been a year and a half since we last scoped so we’re scheduled to do that on August 19th. The blood eosinophils can’t really tell us how his esophagus is doing. And especially with the reintroduction of wheat back into his diet, even though he seems to be tolerating it fine, we really need to look at the esophagus to be sure. I can’t wait for them to find a better way to monitor this condition. Some kids are scoped every few weeks which is unfortunate, but what else are we to do?

Depending on his scope results we’ll see what our next step forward will be. Though I got to thinking after looking at his medical history notes…. At his last scope in January 2007 his blood eosinophils were normal and his scope was 100% clear, and he was still eating milk and barley. So was the recent removal of those two foods even necessary? What truly caused his blood eosinophil levels to rise since in the past milk and barley weren’t the culprits.

Still many questions to be answered. But we’re doing quite well for now. He’s happy and he’s eating quite a few foods so that’s all good!
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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!