Food is Celebration

Think about it.  Every celebration, special event, birthday, and holiday all revolve around food.  With the passing of Halloween and Thanksgiving, and Christmas just around the corner, holidays become a day that looks much different for a child with EoE.  Turkey, mashed potatoes, stuffing, gravy, pumpkin pie, rolls, candy canes and all the other traditional holiday items are replaced with formula.  Sometimes not even by mouth, but by feeding tube.  Some children don’t have any safe foods or so few that many of the previously mentioned food items are not within their scope of “safe foods”.

Brady’s food allergies consist of eggs, wheat, soy, corn, milk and peanuts.  When we were first told about Brady’s extensive food allergy list, I wondered what was left?  Watermelon?  At least, that’s what it felt like.  Fortunately, Brady can still have the occasional piece of toast or cracker because 90% of his daily caloric intake comes from his hypoallergenic formula.  Some kids have zero safe foods and therefore get by solely on the nutrition of their designated, often foul-tasting formula.  Some kids can have no food by mouth and get by solely on the nutrition that gets pumped in via NG or various forms of g-tubes.

Brady doesn’t find much joy in food.  Period.  I can’t say I blame the kid considering he vomited non-stop for the first 3 years of his life.  He’s been in feeding therapy with occupational therapists and a psychologist who have all tried to help him get over his fear of food.  Unfortunately the therapy hasn’t had lasting effects or success. 

Brady will occasionally partake in a bowl of gold fish or wheat and cheese crackers or french fries.  Sitting at a table for a meal can be quite something most days.  We’ve taken the pressure off the introduction of new foods recently, however we’ll revisit feeding therapy in the new year.  I have to keep the dream alive somehow.  My hope is that one day we’ll have a breakthrough with Brady’s relationship with food. 

Holidays like Thanksgiving and Christmas are not traditional for our family.  In fact, it often is about helping Brady be entertained while everyone else eats.  My world is different and that’s hard to swallow sometimes.  What I wouldn’t give to make a plate for my son that consisted of all the traditional holiday goodness.  What I wouldn’t give for our family of four to be able to all sit down together to eat a stress-free meal.  My 2 ½ year old daughter finds such joy in food that she often exclaims, “I like it!” after trying a new food.  She is flourishing, growing and glowing from her daily intake of food.  My son on the other hand is pale, thin, and sickly as he continues on his daily battle with EoE -- and that is so hard to see and accept some days.

THE FLARES

Brady has his good months and bad months that are unfortunately unexplained.  We can’t figure out sometimes why he has a flare when virtually nothing has changed in his diet.  The rollercoaster ride is definitely in effect with the soaring and plummeting of Brady’s weight.  It takes such a long time for Brady to put on weight, yet he can drop 3 pounds overnight with a flare.  After a flare, it takes days to get him to want to each much of anything again.  Therefore, the months it took for him to gain those precious 2 pounds will take months to get back on again.  My son is 4 years old and weighs, on a good day, 32 pounds.  For 20 months straight he hovered around 28-30 pounds and just recently added some weight since September. 

For months we had planned to have a “30 Pound Party” to celebrate this huge milestone.  However, every time we got close and I thought about planning an impromptu celebration with family and friends, Brady would inevitably flare and go right back down to 27-28 pounds.  This cycle lasted for well over 20 months and the “30 Pound Party” seemed like a distant dream.  He finally hit the 30 pound mark pretty consistently this past summer.  However, due to life changes with Brady (another day, another blog), the party idea just sort of disappeared.

It’s not easy watching the weight fluctuations.  It’s not easy to hold his hand and his head when he vomits and cries from stomach pain.  Food is oftentimes not celebrated in our home.  We get creative with holidays and birthdays so that not everything centers around the birthday cake or family meal.  However, I know I have much to be grateful for, despite this journey. 

GRATEFUL

I’m grateful for the support of our family and friends.  I’m grateful for the strength God grants me each day.  I’m grateful for the lessons learned.  I’m grateful for the health of my children.  Brady is having a good month.  Who knows what next month will bring, but for now I’ll relish in his slight weight gain and resilience.  I may even celebrate that success with a bowl of ice cream, after all, food is celebration, right? 

I also have a “35 Pound Party” to plan.  That party may not be for months or even a year, but I know this party will happen someday.  These milestones will be remembered and celebrated, with or without food. 

Brady's 1st Birthday Party.  Introduction of first cake?  Disaster.  Shortly after a little taste, full meltdown ensued. 

Brady's 2nd Birthday. Still keeping the dream alive that perhaps this year is the year Brady will try birthday cake and LIKE it.  Wrong.  Disaster #2.

Brady's 3rd Birthday.  We finally gave in and realized that birthday cake was just not gonna happen.  So, here's the introduction of birthday toast.  Success!  Hurrah!

Brady's 4th Birthday.  No cake, just a trip to the fire station.  One happy boy.  We finally got this birthday thing all figured out. 

Initial Plan of Treatment

WALKING TALKING PHARMACY

Pulmicort.  Prednisone.  Budesonide.  Budesonide Slurry.  Prevacid.  Kids Essentials 1.5 Cal Boost.  Pediasure.  Duocal.  Periacton.  Cypraheptadine.  Miralax.  Words that were so foreign before, quickly became a part of our everyday vocabulary for Brady's initial plan of treatment.

Our in-home pharmacy



We got to be on a first-name basis with our local pharmacist as we became frequent flyers of Walgreens.  After diagnosis, it was determined that Brady would go on an acid-reducer (Prevacid) and would also be given Prednisone to help with the swelling in his esophagus.  We were warned about Prednisone in the fact that Brady would gain weight (which was a great side effect for us since Brady was so underweight), but also that Brady’s mood swings and temper may flare.  That was the not so fun side effect.  Brady was all over the place during the 5 weeks he was on Prednisone and melt downs and temper flares became the norm, in addition to the infamous “terrible twos”.   But he also gained 3 much needed pounds and became puffy and developed what is commonly known as “moon face” due to the puffiness caused by the drug.  The downside of Prednisone is that it can start affecting other organs and so it was decided he would only be on it for a limited time. 

Before Prednisone

After five weeks on Prednisone



After five weeks, we then moved on to Pulmicort (Budesonide).  This drug was to be a swallowed steroid and mixed with 5 packets of Splenda aka the “Budesonide Slurry”.  Brady hated it.  We tried every which way to get him to swallow it.  Every time we got the drug down him or partially down him, Brady would either spit it out or vomit it up (along with the rest of the contents of his stomach).  It was so depressing to see the hard-fought calories that we tried to get down him during his meal come right back up as a reaction to taking meds.  It became the “Battle of the Budesonide” and my husband and I lost that battle every single time.  We had to attempt giving him the Budesonide Slurry two times a day.  This lasted for months and eventually we decided to give up on the battle.  The stress just wasn’t worth it. 

We also had to fight the “Battle of the Boost” on a daily basis.  Brady received much of his calories through a liquid diet, mostly consisting of Kids Essentials Boost 1.5 Cal.  Boost doesn’t smell that great and the taste is even worse.  Yet, we had to convince a 2 ½ year-old that Boost was “yummy!” and that he needed to drink 3 bottles of it every day.  Boost was also extremely expensive and not covered by our insurance (boo!).  After opening a can of Boost, we had 24 hours to get Brady to drink it.  Otherwise we had to pour the liquid gold down the sink (so sad). 

FEEDING THERAPY

During this time period, Brady was also in feeding therapy with a wonderful occupational therapist (Allison) through a program called Help Me Grow.  Allison was amazing with our son.  She also gave me hope that maybe someday Brady would get over his fear of food and texture issues.  She got down to his level and tried to make our meal times less stressful.  On average, it would take my husband and myself anywhere from 45 minutes to 75 minutes to get Brady to eat 10-15 bites of food. 

Brady had a diet that consisted of 5 preferred foods:  toast, crackers, chips, yogurt and the occasional chicken nugget.  That’s it.  And we had to try to get him to eat bites of his preferred foods along with the non-preferred foods which consisted of every other food known to man.  Cookies, ice cream, hamburgers, grilled cheese… pretty much anything that had some fat in it to help him gain weight.  Brady hated every last food he tried.  Again, with the spitting and vomiting at almost every meal time.  He would sometimes hold out for 20 minutes on taking one bite.  Twenty very long, agonizing, want to pull my hair out minutes. 

Due to Brady’s limited diet and lack of intake, I am the opposite of most moms when it comes to grocery shopping.  Instead of shopping for healthy choices like yogurt, veggies, fruits, etc., I am often scouring the back of labels looking for the highest fat content and calories.  I hit the jackpot when I discovered Land O Lakes butter that had a whopping 100 calories (100 calories of fat!) per tablespoon.  Score!  I tried melting the butter and hiding it in anything.  I did the same with oils and corn syrup, along with adding a product called Duocal to his preferred foods like yogurt and juice.  This was all with the recommendation from Brady’s dietician. 

It was and still is such a frustrating process to help him gain trust in food and to want to try new things.  Even to this day, at the age of four, Brady will still ask what the names of various foods are.  Food is such a foreign concept to him.  It's times like these when I have to tell him, "that's spaghetti" or "that's a sub sandwich" or "that's lasagna" that it hits me how different his life is.    

Brady has seen 3 occupational therapists and 1 speech therapist over the past two years that have all had their successes at times, but is often hard to sustain for our family.  I know the techniques and theories of feeding therapy, but Brady is a very strong-willed little boy (don’t have any idea where he gets that glorious trait from)  J,  that something simple like trying to take a bite of a cookie turns into, well… something much more.  And let me tell you, it isn’t pretty some days. 

We are currently taking a break from therapy.  Our last therapist said she needed a break and that she felt “stuck”.  Welcome to my world, honey.  I’ll be honest that the break is as much for Brady as it is for me and my husband.  It takes so much will-power, strength and discipline to follow through the therapy techniques at each meal. 

For now, we take each meal, day by day.  Some days are good, some days are bad, and we have to be okay with that -- otherwise we’d go crazy. 

Travels

ROLLERCOASTER RIDE

After the official diagnosis, our rollercoaster ride continued.  Although we were thrilled that we finally had a diagnosis, it also meant, we had a diagnosis.  This rare disease and everything that came with it was scary, and downright devastating at times.  I did the worst thing possible and scoured the internet looking for something, anything to tell me what the heck was going on with my son.  I ended up scaring the crap out of myself and the more I looked, the scarier it got.

Okay, so enough with that.  But what came later also wasn’t fun.  Our family definitely felt different and I began to feel like we were on our own island.  It was lonely and depressing at times.  This was so not what I wanted for our son.  I think I felt my American dream for Brady slowly fizzle and what was left was anger and disappointment.  Like most parents who have been dealt similar cards, I had to ask, why Brady?  Why my son?  This beautiful, innocent little boy that was forced to battle food every single day. 

Not long after diagnosis, I came across the following excerpt entitled, “Welcome to Holland.”  This was written by Emily Perl Kingsley in 1987.  This spoke to me on so many levels and still does. 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

ACCEPTANCE

I can safely say that I have gone through the four stages of grief and well on my way to the fifth, acceptance.  Holland isn’t so bad.  Most days.  And as for that all American dream I had for my son?  It's still there, it just looks a bit different now.

The Long Road to Diagnosis

IN THE BEGINNING


Looking back on my pregnancy with Brady, I find it ironic that Brady’s life has mirrored what my 9 months felt like. Around week 7 of my pregnancy, the all-day nausea set in. I wasn’t one of those lucky women who didn't have morning sickness, in fact, I wasn’t one of those lucky women who only had morning sickness. I was sick all day-- morning, noon and night. By week 9, I was hospitalized for three days because I was so dehydrated from all the vomiting that I couldn’t even keep water down. Several highly skilled nurses couldn’t start an IV when I was first admitted, which was downright painful since I’m not a fan of needles. Eventually I was put on Zofran (a chemotherapy drug) for the remainder of my pregnancy to help control the nausea. It definitely helped, but I still vomited almost on a daily basis… for my entire 37-week pregnancy.






Brady came three weeks early. He was small for his age, weighing 5 pounds, 11 ounces. He had feeding issues from the beginning having issues with latching on and eventually with keeping his small bottles down. He lost weight the first week, dipping as low as 4.5 pounds. We had to go to his pediatrician’s office every 3 days for weight and height check-ins the first 3 weeks of his life. He eventually put some weight back on, but the growth was painfully slow. He was born in the 3rd percentile for weight and 10th percentile for height. To this day, he remains steady in those percentiles for both height and weight and Brady is now 4.5 years old.






From birth to 6 months, Brady would vomit regularly. His doctor said that was normal, yet he was never given an acid reflux medication. I was a first-time mother and really didn’t question his lack of diagnosis. The real fun began at 6 months when we started to introduce cereal. It was a tough transition and it took several weeks for Brady to get used to the new texture. He would occasionally projectile vomit, and again the doctor said this was “normal”. I didn’t question her, after all, she was the doctor, right? I have since learned to question EVERYTHING.






When Brady turned 9 months, the party officially started. We tried to introduce baby foods, stage 2 and 3. Brady started to violently projectile vomit (3-4 feet from his body) during or right after a meal. I remember the countless times I wiped down the walls around his high chair and mopped the floor. He would scream and cry at meal times and outright refused to self-feed himself. My husband and I quickly learned the fine art of spoon-feeding while doing a song and dance to keep him entertained and distracted enough to take a bite.
















At his 12-month check up, I voiced my concerns on the projectile vomiting issues and I was told, “He’s just having food texture issues.” End of story. I finally started to listen to my mother’s instinct and transferred Brady’s care to another physician at a different practice. I was quickly appalled when she said the same thing. I started to second guess myself, and started to think that perhaps I was overreacting. The second doctor wanted to use a “wait and see” approach. Three months went by, and still she didn’t think there was cause for concern. When Brady turned 18 months, we changed physicians for a third time and explained his story all over again. Painful. I was downright flabbergasted when she had the same approach as the other two… wait and see. I was so over “waiting and seeing” at that point. But I felt like I didn’t have a voice or a say. That what I thought, didn’t matter or count. I was so wrong.













SUDDENLY EVERYONE IS AN EXPERT


The first two years of Brady’s life, our lives were turned upside down. Brady had problems. We had problems. And suddenly our family started to look and function differently from other families. We also told our story… in a way of explaining why we couldn’t meet friends and family at restaurants or at their houses during meal time. We explained over and over again why meal time was stressful and painful time for our family. All I can say is blessed are those with children who enjoy eating. It would take me and my husband on average an hour to feed Brady each meal. Every last minute was full of stress -- worrying if he was getting enough to eat. Hoping and praying Brady wouldn’t turn right around and vomit up every last hard-fought calorie. The kitchen table clearly became our enemy. Even trying to get Brady to go into his high chair was such a nightmare. The kicking, screaming, and crying at every, single meal. And I’ll admit it, I hated every last minute of it. Every. Last. Minute.






I turned to family and friends, telling our stories of woe. Some would listen, offer hugs and encouragement. Others… well, they believed themselves to be an expert on the matter. I can’t tell you the amount of times I heard, “Do you think it could be this (insert crazy disease)?” Or, “Why don’t you try this? It can’t be that hard.” Or, “This is how you need to handle it. This will fix it.” Unfortunately, I learned my lesson a few times about talking of our world. The insulting diagnosis’ that would come out of some people’s mouth were appalling, especially when these people had no medical background. And unfortunately, I cut ties with a few of those who simply couldn’t understand and made the situation worse. I still get sad about a few of these burned bridges, but in the end, I learned that I needed to protect myself.










FED UP


Sadly, it took me another year until I was so fed up with the endless cycle of Brady’s vomiting, picky eating, and failure to thrive that I finally demanded Brady be referred to a GI specialist. He never had been put on any acid reflux meds or had any testing up to this point.






At age 2.5, Brady saw a GI for the first time. He immediately heard our concerns and thought that Brady needed to have further testing. Hallelujah! Someone heard me!






Brady had an upper GI with barium swallow to ensure his anatomy was normal and that his flaps were closing appropriately. Good news! His anatomy looked normal. Brady was then scheduled for an upper endoscopy with biopsy. This was tough. In fact, I have no words for how tough this was. We went to the hospital and settled into the pre-op area. Brady was given a stuffed puppy and a pair of yellow scrubs to put on. He ran all around the pre-op area playing and laughing and having no idea what he was about to go through. I, on the other hand, was a mess. The time finally came for the nurse to get Brady and carry him back to the OR. I vividly remember Brady reaching out for me and screaming, “Mommy!” He cried the entire way back to the OR. I cried all the way back to the surgical waiting area and during the entire procedure.






Eventually, his GI came out to see me and my husband to tell us that he had found several things. One, Brady had “adult-like” damage in his esophagus and stomach due to bleeding ulcers. One of those ulcers being the size of a golf ball. This was rather large for a boy of Brady’s age. Two, Brady had furrows all up and down his esophagus. Three, Brady had a substantial amount of white lining build up in his esophagus that was going to be further tested. Four, Brady more than likely had something called Eosinophilic Esophagitus. Say what, you say? Exactly.






A few days later, it was confirmed that Brady did indeed have Eosinophilic Esophagitus. The medical abbreviation is EoE. Finally! We had something to call what my son was going through. All of the sudden the incessant projectile vomiting, failure to thrive, fear of food, lack of appetite, etc. all had a name. EoE. I did my research, I looked at non-profits dedicated to research for EoE, and I scoured the internet looking for blogs of parents with kids with EoE (this part without much success… hence my newly created blog).






There are many websites you can visit to learn all about the disease. Below are a few that give a summary, symptoms, and treatment of EoE.





http://curedfoundation.org/site/what-is-ee/




http://apfed.org/drupal/drupal/e-learning-center




http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/?utm_source=Cincinnati%2BCenter%2Bfor%2BEosinophilic%2BDisorders&utm_medium=shortcut&utm_campaign=cced







And to think. This was just the beginning.

Welcome to Craz-EoE-town

I've been wanting to start a blog for quite some time now.  Mostly as a way of chronicling our journey with our 4-year-old son, Brady, who was diagnosed with Eosinophilic Esophagitus (EoE) two years ago.  This whole blog idea also came about as my way of lending support to those that are going through it and to help those parents feel not so crazy.  Let's face it, we've all been there.  That's why I call our life "crazy town" some days.  If you would have told me 5 years ago what we would be going through today, I never would have believed it.  But it's happening... and there's nothing I can do about it but continue to fight for my son, become an even stronger person than I ever thought possible, and keep the dream alive that some day there will be a cure for EoE.  That some day Brady will be okay.  That some day the stress and tears and the worry will subside and this will be a distant memory.  Some day.

Another reason to start this blog was to provide a lens to family, friends, etc. who have no idea what we go through on a daily basis.  I have great support in my life. It's through the encouragement of friends who are sometimes in a state of shock and awe when I tell them about something that's happened in our EoE world that have encouraged me to tell my story.  To those friends, I say thank you.  Thank you for listening.  Thank you for offering a shoulder to cry on and prayers on days when it's not so good.  Love you!