National Eosinophil Awareness Week - Day 3

Today Andrew and I wore our Eos T-shirts to school.  We also passed out dum dum lollipops to help spread awareness for these disorders.  I was pleased when several teachers asked me what my shirt said and I had the opportunity to educate them, if even just a little, on EGIDs.  The student's in Andrew's classroom (and mine as well) were full of questions.  I continue to be proud of how well Andrew handles his disease and now of the advocate he is becoming.  It is so very important for the people that are suffering from this disease that awareness is spread.  Please take time to write to your congress person tomorrow to remind them that this is National Eosinophilic Awareness Week.

Thank you to everyone that continues to support us!

This is a video put together by another Eos family.

Just......Imagine a Cure!!

National Eosinophil Awareness Week - Day 2

Today is the second day of National Eosinophil Awareness Week.  My goal was to post something each day no matter how busy I was.  I have already missed my goal, but I am going to work hard to obtain it for the rest of the week.

I feel it fitting to start this post with an update on Andrew's status.  Andrew began food after 9 months of an elemental diet last fall.  He has failed 4 trials by symptoms and had "passed" peaches and sweet potatoes with 12 eos per high power field in January.  On May 5 he had another endoscopy with biopsies after trialing pinto beans and grapefruit.  To our delight, the results were the best he has ever had...0-1 eos per high power field in all three sections of the esophagus.  For a child who at one time has had so many eos that the pathologist could not count them on the biospsy slide, this is truly amazing. Actual remission, even if he is on 60mg of prevacid and flovent each day.  What a way for us to prepare for National Eos Week!  And Andrew was able to celebrate by adding Lamb to his diet.  I wish I could have captured the pure joy on his face while eating that lamb chop so that when he is in the hospital or in pain I could take it out, look at it and remember there will be more days like this. 

Please help spread awareness for this frustrating disease so that the children and adults suffering can someday enjoy lives normally once again.  People who suffer from eosinophilic disorders can not tolerate food proteins.  Many of them that are on elemental diets can only eat dum dum lollipops.  Although they are not yet safe for Andrew, he will still be passing them out to spread awareness tomorrow.  Won't you join him?

Just a Glimpse

Video by APFED

Join Us For Eosinophil Awareness Week

May 13 – May 19 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…

Think about food…how many times you eat each day, how much you enjoy the smell as it is being prepared, the anticipation of a favorite meal or going out to a restaurant, the flavor of your favorite food when it touches your tongue, your morning cup of coffee, the sense of togetherness you enjoy when you share a meal with family or close friends, the excitement you or child gets when they see and then bite into their birthday cake, holiday meals with loved ones, taking a spontaneous trip to the ice cream parlor with someone special on a hot summer day…and the list goes on. There are so many ways we enjoy food as an individual and as a sense of community. Now, imagine being told that you can no longer eat food. You have to receive all of your nutrients from an amino acid formula that contains no whole or partial proteins. A formula, I might add, that is so unpalatable that most children that have to be on it have to take it through a feeding tube. Imagine you have to do this because the food that is supposed to sustain you and keep you healthy, makes you extremely sick.

This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EoE). EoE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EoE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EoE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him/her well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.
At present, even with the rapid increase in prevalence of EGIDs, there is little public funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.
If you would like to learn more or make a donation in Andrew’s name, go to

http//:www.apfed.org/

If you would like to participate in National Eos Awareness Week here are some things you can do (However, if you feel that you can not do any of the following suggestions, just by making one more person aware of Eosinophilic Diseases you are helping our cause):

Wednesday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Thurday, May 17: Wear hot pink and purple (the color of eosinohils on biopsy slides) and hand out dum dum suckers to your friends and coworkers. Many kids with Eos Disorders can not eat anything with food proteins. However, dum dums are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Friday, May 18:“Eat like Andrew for a Day Challenge”. Andrew began trialing food in October of 2010. He has tried a total of 16 foods. We know he has failed 11 and is now eating 5. He is not currently in remission.  We have taken out the last food he was trialing.  He will scoped on again on June 14 and we hope he will once again be in remission. The elemental formula is still his main source of nutrition. However, if you would like to try to eat like my Andrew for a day, his foods are sweet potato, lite canned peaches, pinto beans (the ingredients can only be pinto beans, salt and water—I have to make the dried beans), lamb and grapefruit. He can have salt and sugar, but no other seasonings or flavor. You may only drink water, nothing else. Be sure you read every word of every label, and there is no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.  Then, take a few moments to let Andrew know, either on here or a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” Challenge went for you.

Saturday, May 19: Please send letters to your congressmen reminding them that this is National Eos Awareness Week.
Thank you for your time.

Ginny and Greg Barton

It's Been Too Long

I just want to say that I have not forgotten about my blog.  The substitute position that was to last 2 weeks in October ended up a full time job for the rest of the year.  Between a child with a learning disability, a child with EoE and working full time (which also means working every waking hour after my children go to bed) I literally have had no time for anything else. 

I miss writing my posts and hope to get one done over Spring Break, but if not, Summer Vacation begins at the beginning of June.  I have a lot of catching up to do!  Thanks for your patience! 

Inhaled Corticosteroids Linked to Diabetes Risks - What About Our EE Kids?

There are few treatment options for our EE children.  They can either be treated through diet, inhaled or swallowed corticosteroids, or both.  In some cases, these inhaled steroids are the only thing that keeps our children in remission.  They have tried food elimination or elemental diets, but have failed until the inhaled steroids that our children swallow were added to the mix.  Although it doesn't cure them, it may allow them to start trialing foods, or eating foods they were unable to before.  Even though we know there may be side effects, they were not supposed to be as harmful as systemic steroids.  The lesser of two evils, and we want our children to feel better and heal.

So when I stumbled across the article Inhalers Linked to Higher Odds of Diabetes in Asthma, COPD Patients I was less than enthused.  It has long been known that oral systemic corticosteroids such as prednisone can cause diabetes, but this is the first time there has been a link to inhaled steroids, said Samy Suissa, director of the Centre for Clinical Epidemiology at the Lady Davis Institute for Medical Research of the Jewish General Hospital. 


In a study of nearly 400,000 people in Quebec, the researchers found that inhaler use was associated with a 34% increase of new diabetes diagnosis and diabetes progression.  The study observed that 30,000 of their patients developed diabetes over 5 and 1/2 years of treatment, and patients that already had diabetes experienced a worsening of their disease. Samy Suissa reports their findings in the most recent issue of the American Journal of Preventive Medicine.  Based on their results, researchers from McGill University and the Lady Davis Research Institute at Jewish General Hospital in Montreal suggest patients should only be treated when there is a clear benefit.  What other choice do our children have?  Does the risk outweigh the benefit?  It seems that we are running the risk of adding just another diagnosis to our already multiple diagnosed children.  But again, I ask, what are the options?

At least in the report Dr. Weiss, who is also a clinical assistant professor at the NYU School of Medicine in New York City suggests that the concern should also be directed at the person's lifestyle, eating habits and other underlying causes of diabetes.  He concedes,  "Yes, we do know that steroids increase insulin resistance and that people treated with steroids require more aggressive diabetes management.  But if we don't generally take an approach that deals with the poor quality of food that people are routinely consuming, the incidence of both these diseases will continue to go up at a dramatic rate."

Does that make me feel better?  Not so sure.  My wish, as I'm sure is yours, is for one of these doctors/scientists to come up with a cure for our children so they don't have to take all this medication everyday, and they would enjoy a life WITH food and WITHOUT pain.

Biopsy after Food Introduction

After being an elemental (EO28Splash) only diet for 10 months, Andrew began eating food in late October.  As I had mentioned in a previous post, he started with bison, but soon had symptoms, so we eliminated it and began sweet potatoes.  He has since been introduced to peaches and broccoli as well.  We had to eliminate the broccoli after a week due symptoms.  The sweet potatoes and peaches have remained a constant, seemingly causing no symptoms.

He had his first biopsy after the food introduction on January 30.  The results, although not positive for EE (>15), were 11 eos per hpf.  This is elevated from his pre food introduction biopsy of less than 5 eos per hpf.  The scope was done only 2 weeks after stopping broccoli, so our doctor said that CHOP reccommends to stop the last food that caused symptoms, but not take out the other foods.  So at this time Andrew will continue with the sweet potato and peaches.  He was also allowed to begin another new food yesterday from the "A List" given to us from our doctor.  He chose one of his old favorites, grapefruit.  It was so wonderful watching his pure joy eating it for "dessert" last night.

That is our plan for the immediate future for Andrew.  However, as all of you with children with EE know, nothing with EE is ever uncomplicated.  As I had mentioned before, he began symptoms with the broccoli a week after beginning it.  One of the symptoms was a constant stomach ache.  This stomach ache has continued even though he has been off broccoli for about a month.  He has battled problems with constipation in the past and is on Mirolax daily, but when they took an abdominal X-ray at the hospital it was clear.  The GI feels that it may be functional stomach pain, but I'm just not convinced.  There is never a dull moment with these kids.   If anyone has any ideas I would love to hear them.

Well, here's to hoping grapefruit will be a successfull food!

A New Year

Wow, once again it has been quite a while since my last post.  In early October I was asked to sub for two weeks for a teacher that was 14 weeks pregnant.  She was put on modified bed rest for the duration of her pregnancy and was unable to return to school.  I agreed to continue teaching the class for the remainder of the school year.  Although I have been crazy busy and extremely tired, it has also been very rewarding.  It has reminded me of the reasons I entered into teaching all those years ago.  And, as an added bonus, I get to teach my son content and writing each day (in our school, third graders switch classes)...and he likes it, too!

So, between teaching and taking care of my two children with special needs of their own, my blog has taken a back seat.  This saddens me because topics constantly creep into my mind that I know will be perfect for this blog.  I am hoping that now that the holidays are over and I am becoming acclimated once again with teaching, things will calm down and I will have some time to devote to some posts once again. 

As for today, a bonus day here in the Carolinas, due to the day off because of the snow, I plan to use some of this time to start some posts...and maybe even finish one.

Happy Snow Day....And Happy New Year!