Allergy Testing is Pointless

I haven't been on recently because I'm just frustrated with this disease and the lack of answers. Short update... after the upper endoscope in August that was not as expected (we expected it to be 100% clear and it was far from that) we were told by the GI to go see the Allergist and get his diet figured out. Well, we talked, and decided to do more skin prick testing to see if there are things in his current diet that could be causing the bump in the road. Well, out of 32 foods and spices we tested, he had a positive response to all of them except four! The doctor wanted to take out quite a few things that are basic standars in our house on an already modified diet. I left the office in tears not knowing how I was going to manage this. At least he didn't remove everything that was positive as is typical or we'd have to seriously consider alternative methods of nutrition. He said he'd call the GI and get back to me because he was considering removing additional items. Well, two weeks go by and no call so I phoned the GI directly. She called me back within 30 minutes. She was shocked but didn't want to take away all foods. She wanted to call the Allergist and get back to me. Funny how later that afternoon the Allergist called and said "did you talk to the GI? Because I did too!?" Duh, yeah, because I couldn't wait for you to get back to me any longer! So anyway, we talked more about all the foods to be removed and he doesn't believe that he's truly allergic to all of these things. But with a test that is only 55% accurate for positives I wouldn't base much on it!! How can you eliminate a child's diet based on such a flaky test!!! So my husband and I talked and we've agreed to remove the wheat again (which we think was the main problem in the first place) and increase the Flovent and as well remove some additional foods based on the most recent skin prick test. He is still eating many foods he tested positive for. But we also wondered, if we remove a ton of foods, how will we know which ones were truly the problem, especially, as mentioned before, it's such a non-accurate test!

The other reason I haven't posted much lately is because I really don't want to attract more energy to this stupid frustrating condition! I have been working with my son to stay positive, to focus on the knowledge that his body is strong and healthy and is getting better and better every single day. Honestly, if the doctor hadn't showed me the pictures of his esophagus, I'd argue that he is perfectly healthy! There is scientific support that the mind and body are very much connected. If he's hearing us talk about his dis-ease all the time, he's going to internalize it. If he's thinking about how strong and healthy he is and how he's getting better every day, he WILL get better every day. It was only after I started sharing our story and hearing about all the other cases out there that we did a backslide into the EE hole. So we're distancing ourselves a bit from the whole idea of having some sort of dis-ease and instead focusing on being healthy! I hope you can all understand that.

Thanks!
Tracy

Scope Results

We did do that upper endoscopy last Tuesday. The procedure went well, the results were not good though. The visuals of his esophagus were quite bad. The biopsy results a couple days later confirmed that the Eos had returned to his esophagus in quite large numbers. Funny thing is, he has had ZERO symptoms or complaints or anything.

We increased his Flovent and made an appt. with the allergist. The Flovent is great at calming them darned eos, but some consider it as "masking" as it doesn't cure anything and once you go off of it, they can come back. Plus, long term Flovent isn't recommended due to the side effects.

We spoke with the Allergist today. We are removing wheat from his diet again. Poor kid. He's so bummed. Even though he had tested negative to wheat recently, perhaps it was a false negative and is the main culprit in the returning Eos. We are also making plans to do additional skin prick testing to see if there might be some other things we are missing. I'm compiling a list of ingredients I typically feed him, including spices such as garlic and oregano, etc.

What about environmental allergens causing this? The GI says it's controversial since the EE usually goes away on a non-food diet, pointing to food being the culprit. The Allergist says that in his field, there is no controversy, environmental allergies can definitely contribute to EE. Jason has been suffering hayfever all spring and summer despite the large dose of daily Zyrtec.

What about Probiotics to help the immune system and the GI tract? Our GI says they're fine to add to the diet. Our Allergist also says there is no harm in trying. Though, there is no studies at this time relating Probiotics to reducing/eliminating EE. There are studies showing that probiotics given to pregnant mothers and infants can reduce the chances of the child developing allergies in the first place.

So, we keep plugging away. Back to the drawing board for some of my recipes, the big one being our pancakes! I can't just go back to the no wheat, no egg version because that had barley in it which we're also avoiding. I'll have to do some experimenting.

Vote For EE - Raise Money for EE Research

There is still time to vote! Go to www.VoteForEE.com now. American Express is going to fund winning projects. We are hoping the Eosinophilic Esophagitis project can be the winner!

Take 2 minutes of your time to vote. You do NOT need to be an American Express card holder.

American Express is going to fund the winning projects with $2.5 million:

$1,500,000 for the winning project
$500,000 for the 2nd place project
$300,000 for the 3rd place project
$100,000 each for the two remaining finalist projects

The funding will be provided to the organizations that have been matched with the final five projects.

We thank you in advance for placing your vote at www.VoteForEE.com

Thanks!!!!!

Planning for Upper Endoscopy Next Week

At Jason's GI appointment last month she scheduled him for an upper endoscopy. I've been talking with the hospital and such getting the final details all smoothed out. What worries me most about this procedure is the need for general anesthesia to get into the esophagus and get pictures and biopsies. Children, anyone for that matter, shouldn't have to do something like this on a regular basis. Jason of course has been a trooper from the day we started poking and proding him looking for answers. He's a tough little guy. The hardest thing for him right now is that I've restricted his diet completely. No cheating with a little corn syrup here and there. Corn is one of his foods he's allergic to. But the allergist says he should be able to eat corn syrup because it shouldn't have that many proteins in it. If you look at the corn syrup industry, they say that yes, there is a little corn protein in it, but it shouldn't bother anyone. Though they don't understand that for some people even the smallest amount could put them in the hospital. We're lucky... Jason doesn't seem to be affected by corn syrup. However, I want to ensure a 100% clear scope next week! If it comes back showing eosinophils in his esophagus, I'll be completely stumped as to why, except for maybe wheat. So you can understand me wanting to make things as simple and understandable as possible. All Jason wants is a lollipop!

Detroit News Story about Eosinophilic Esophagitis

I'd like to share another news story with you about another child and her family dealing with Eosinophilic Esophagitis. I think that seeing the faces of the people affected by this condition will help to spread awareness and help people to understand that this is a very real affliction. I think it also helps to hear different peoples stories as not everyone got their diagnosis the same way.

http://www.clickondetroit.com/video/17179036/index.html

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.

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!