Going "Home" to Visit Eosinophilic Family!

The first time that a physician mentioned eosinophilic esophagitis (EoE) in relation to my little overachievers, I was devastated!  All that I knew of the condition came from observing a friend whose toddler son had it.  This sweet child had only 3 or 4 foods that he could eat, and my friend's stress level was sky high.  She focused nearly all of her energy on keeping her son nourished enough to avoid surgical implantation of a feeding tube.  I saw her battles with the insurance company, and how she scrimped to pay for the formula that cost roughly the same amount as her monthly mortgage payment.  I was not able to observe the effect on her husband because he was always working in an attempt to pay down the medical bills.  This little boy was growing up and meeting milestones that could never be revisited, and his parents were fighting so hard just to survive.  I wanted no part of that world!

My first response was to commune with my keyboard.  In February 2008, a keyword search for eosinophilic esophagitis led me to the American Partnership For Eosinophilic Disorders (APFED) and a relatively small list of research studies.  APFED's website summarized what I was not able to understand of the research.  I was relieved to learn that most kids with EoE are not like my friend's son!  Roughly 3/4 of EoE patients can remove the most common allergens from their diet to get rid of the excess eosinophils and find relief from symptoms.  Those foods are milk, soy, eggs,wheat, nuts (peanuts & tree nuts) and seafood (fish & shellfish).  That's a very tough diet to maintain!  But as long as they don't eat those foods, those EoE patients are healthy.  My little overachievers, of course, fall into the 1/4 of patients that require further food elimination or the use of steroids to manage their condition.  Based on the large number of foods that we knew to be problematic, we went straight to elemental diet which is the removal of all foods.

I expect you're getting a good laugh at my expense about now, but that's okay!  I have come to accept that this is just the way that things tend to work with my bunch.  To give my friend credit, she did not laugh when I complained about how HARD it was to live this life and how LITTLE information there was to guide us!  Instead, she put me in touch with a group of families whose children all had EoE or a similar condition caused by too many eosinophils in other parts of the GI tract.  It is the support of those other families and APFED's educational resources that helped me understand and adjust to what I know refer to as the eos world.

In 2009, I was able to attend APFED's annual patient education conference.  There I met countless other families.  For some, the diagnosis was new and overwhelming.  Others seemed like veterans in the daily fight against the evil eosinophil.  One such father took the podium the first evening.  His son was being successfully treated with elemental diet and a gastronomy tube.  He told us how difficult it was to hand his son a bowl of crushed ice to eat for a snack when the son had first stopped eating all food.  There were silent nods of understanding.  After gaining his composure, the father had gone to sit with his son.  When he rounded the corner, he found all of his children sitting together on the couch, each child with a bowl of ice in unspoken support for their brother.  In that moment, the emotional impact of EoE hit me.  I choked on a sob and bolted to the ladies' room where I could cry with a smaller audience.  And there was an audience, as I was quickly joined by a few moms who had come to offer their own quiet support.  After a splash of water and a few deep breaths, I rushed back my seat...just in time for the father to give reassurance that life with EoE does get easier.  And I knew then that my boys would be okay.  Even if they could never eat full diets and they always needed periodic surgical procedures, they would be okay.  And so would I.

 
Over the next day and a half, I sat through presentations where physician researchers addressed the audience of patients and parents as equals.  They took the time to explain medical terminology as they introduced it, but they otherwise addressed us as equals.  There were break out sessions where we were able to interact with the speakers in small groups to gain more detailed knowledge in areas of special interest.

Since that first conference, I have attended APFED's patient education conference each summer.  The information that I learn exceeds what I can find on the internet.  I meet the people that are changing the world for our growing community of eos families.  I reunite with friends that I see just once each year.  APFED's president, Wendy Book, once said that going to the annual patient conference is like going home.  And I agree!  As I prepare to spend this weekend in Philadelphia, I don't feel like I am preparing for a medical conference.  I feel like I am going home to my eosinophilic family!



While I am in Philadelphia this weekend, I will be participating in APFED's Hope on the Horizon Walk.  All funds raised through this walk will be directed to research on eosinophil associated diseases.  With time, research and continued collaboration between centers, it is my hope that there will one day be a less invasive way to diagnose, treat and monitor EoE.

Please consider sponsoring me for the Hope on the Horizon Walk.  You can view APFED's solicitation disclosure here.  There are 3 ways you can contribute.

1. Donate online through APFED's website with a credit card.
   Payment type = Hope Walk - Philly
   In Honor Of = Overachieving Bunch
2. Mail a check or money order directly to APFED.  Rather than risk an entry error, I ask that you visit APFED's donation page for further details.
3. Spread the word!

Three of my favorite overachievers walking for
APFED's Hope on the Horizon Research Fund.

Xolair: An Overachiever's Miracle Drug

It has been 10 years since Xolair hit the market.  Food allergies weren't even on my radar then, and I couldn't tell you much about asthma in general - let alone severe persistent asthma.  The only reason that I read the article about this new wonder drug is that I was stuck in a tiny room with nothing else to do.  I was annoyed with my doctor because he insisted on treating my shortness of breath and monitoring me for a while even though I had "only" come in with hives from a drug reaction.  Yeah...  I was clueless back then!

Whether it was a whisper from God or just because I'm a science nerd, I was compelled to read that article through to the end even though most of it was beyond my comprehension.  What I did understand is that this new injectable medication, administered once to twice a month, was going to change the allergy world.  One allergist was even quoted as saying that Xolair was going to put him out of a job!

When Overachiever #1 was a baby, we saw many signs of allergy.  His eczema was severe and resistant to standard therapies.  He always had some nasal congestion.  By 5 months, he had a constant wheeze that could be heard from several feet away.  As a "nervous" first time mom, I couldn't get anywhere with his doctor.  Then he stopped breathing during dinner when was he was just 7 months.  The ER doctor got us set up with an allergist.  Skin prick testing revealed multiple allergies.  We left with instructions to eliminate peanut and egg from his diet, and to find a new home for our beloved pets.  There were more medications than I ever would have thought safe for such a tiny child!  A home healthcare company came by the next day to deliver a nebulizer and teach me how to use it for the asthma that had also been diagnosed.
 
Life with an asthmatic baby was chaotic!  Nebulizer treatments were scheduled for twice daily to deliver the inhaled corticosteroids that were supposed to control his asthma.  Oral medications for asthma and allergies were scheduled for twice daily.  Emollients were applied throughout the day, and steroid creams were added in once or twice a day to keep the eczema halfway controlled.  We had to watch the clock to ensure that we were not giving too much albuterol.  We rarely went a day without adding in a dose or two of Benadryl.

Beyond medication, we learned that restricting activity would limit the wheezing.  Contact with furry animals must be restricted.  Airborne pollens and molds are problematic, so time outside has to be limited in spring, summer and fall.  Allergy shots were started at age 3 (or was it 4?) in order to give some relief from seasonal allergies.  Extreme heat and cold are additional asthma triggers.

We eventually became accustomed to this new way of overachieving.  Our sweet boy was just going to pick up whatever bug he encountered.   He would be sicker than the rest of us, and for way longer.  We settled into a pattern that included 5 days of oral steroids every 4 to 6 weeks just to keep him out of the hospital.  Phrases like "respiratory distress" and "intractible wheeze" were added to my vocabulary.

Doctors started suggesting Xolair when Overachiever #1 was 3 or 4.  They would tell me that this drug WOULD give him relief, but that there was no way that we could get insurance to pay for it because it has not been approved for use in children.  We couldn't afford to pay for it out of pocket, so Xolair was nothing more than a carrot just dangled there to taunt us!

When our allergist suggested a few months ago that we should try to get Xolair covered by insurance, I was doubtful that the approval would go through.  But we had letters of medical necessity from 3 board certified allergists, and approval was quickly granted for a 6 month trial.

It will be 2 months tomorrow since the first dose of Xolair was administered.  Two months ago, Overachiever #1 could only play outside for an hour before his asthma was flaring too severely to stay out.  He can now be out (even on high pollen days!) for 3 hours before he is miserable.  Previously, every sinus infection led to an asthma flare and a 5-day course of steroids.  We've weathered 2 sinus infections already.  His asthma did flare, but we were able to manage at home with albuterol.  I can't even giving the last dose of albuterol.  It's been at least 2 weeks since we've had to pull out the inhaler, and I even put away the nebulizer last week because we haven't used it in a month.  A month!!!

Perhaps the most exciting improvement that we've seen has nothing to do with the reason that we started Overachiever #1 on Xolair.  It is the lack of symptoms related to food allergies.  Almost exactly 2 years ago, ingesting a very small amount of apple cause flushing and facial swelling.  It has been almost a month since we started a trial of apple.  So far there has been no flushing and no swelling.  In fact, there has been no sign of any immediate allergic reaction!  There are some symptoms that could indicate an EoE flare, but it's too soon to say.

Xolair may not be putting allergists out of business as was once predicted, but it sure has been a miracle drug for my little overachiever!

How to Eat an Apple

Overachiever #1 has been trialing cooked apples for several weeks now.  He's been doing VERY well, with no signs of an IgE mediated reaction (no hives or breathing difficulties) and minimal symptoms that could be attributed to an eosinophilic response in the GI tract.  We had been reluctant to transition to raw apple because we were afraid to mess up a good thing.  (And by we, what I really mean is me!)  It is so very difficult to begin a new food trial knowing that, if the usual path is followed, we will have to take it away again in a couple of days, weeks or months.  While I would like to be optimistic, I am more of a realist by nature and the odds just really don't seem to be in his favor!

So what's a reluctant mother to do?  Ask the doctor, of course!  But not just any doctor.  I needed to hear from a physician with the knowledge and compassion for our experience who could gently point out that my fear is overblown.  As luck would have it, we were scheduled to see two such doctors!  I often refer to first as the Eternal Optimist.  I can walk into his office filled with anxiety and armed with a miles-long list of questions that I simply MUST have answered.  (Who doesn't need a plan A, B, C...Z?!)  When I leave his office, I am feeling totally calm and comfortable with "let's just see what happens" as the answer to most of my questions.  (How does he DO that?!  I want that calm in a bottle!)  This doctor, of course, told me there was no reason not to proceed with raw apple and that we have a good chance of it going well.  But that's not  a surprise to anyone, is it?

What I really wanted to hear was what the Realist would have to say!  He, too, feels that it is safe to proceed.  And even better, there was not a hint of the "this woman is crazy!" look that I get from most doctors when I indicate apprehension about proceeding with food challenges.  Perhaps I did an awesome job at hiding my fears...or perhaps this doc just "gets" it as no one else does.  Or maybe (just maybe!) I am simply over-analyzing again. It's been known to happen!

So I washed an apple and handed it to Overachiever #1.  Then I tried to keep myself busy in the kitchen so that he wouldn't have to endure me staring at him.  I think I made it about 10 seconds before I just had to look!  And right then, my heart broke.  In just a few months, it will be 5 years since we initiated a strict elemental diet.  During that time, a lot has been lost.  The muscles of the mouth and tongue weaken without the constant workout of chewing and manipulating various foods in the mouth.  (One can only create so many textures with sugar and ice!)  Even something as simple as knowing which teeth to use is tough when you've not had to do it since you were 3!  Realizing this brought tears to my eyes.

Putting on a smile, I noted how tough it is to break through the skin of an apple.  We talked about how some of our teeth are pointed while others are broad and almost flat.  We had spent many hours recently digging dinosaur bones out of plaster with various tools.  He remembered that the sharper tool had a different purpose than the one that looked like a hammer.  He hypothesized that our front teeth are intended for biting off pieces of food, and our back teeth are for chewing it into smaller pieces.  Then we tested that hypothesis.
   

Biting into this apple is hard work!

It was a real workout for those under-utilized jaw muscles, but those front teeth did the job.  And then the back teeth did theirs!

It worked!

And that, my friends, is how you eat an apple - one bite at a time.