Bittersweet

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Today I found out that my son is in the very capable hands of the Children’s Hospital of Philadelphia.  I also found out that he has many more health problems than EoE will ever explain.  I look forward to the treatment that Brian will receive, but unfortunately that means he and my wife will be there for at least two more months.  Brian is officially not eating food and on a formula only diet from now on.
I miss them dearly.  When Erin called with the news I was glad that I was not near my co-workers and that I was wearing sunglasses.  You are right honey, I am dead inside, but this kind of situation would make a friggin’ robot cry.  I didn’t even cry when I got shot, but that’s a story for another blog.
I was most worried about telling Addi that she won’t see mommy for her first Feis (an Irish dance competition), back to school Mass, or the first day of school.  I did not want to see the look on her face when she received the news. But, like most kids, she is resilient.  She took it well and when I explained that she will be staying with grandma when school starts, her face lit up.  When I added that we were going to find some way to see Mommy and Brian, she was beaming.  Oh, to be six.
I am writing this entry because since I am emotionally stunted I will be able to get through this.  Erin has taken the news hard and it is too soon for her to find a catharsis in writing an entry.  I miss her and Brian beyond words.  It has been seven weeks and we are looking at at least eight more.  I know, in the grand scheme of life, we will look back and be glad we did this, but for now it just plain hurts.
My wife may not agree, but I am an optimist.  I see the end game here and know the sacrifice will be worth it.  Somehow, we will find the funds to pay for this and be a family reunited.  Somehow, I believe that we will find out what is going on with Brian.  Somehow, we will provide Brian and Addi the best “normal” childhood that we can.  I have also bonded with Addi in a way that would have never happened otherwise.  She is such a good kid.  With her I have leaned that cheerleading camp is too loud and cheery, swim lessons are great until someone poops in the pool, and I know what slip jigs, light reels, and hornpipes are (google it).  We have dates at Chili’s (she is like her Papa and requests the same table) and hike the mountain behind our house on the weekends.
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Family, friends and co-workers have been immeasurably wonderful in their support, love, and day to day help.  My dad and stepmom have taken to reading books on microbiology to help understand what is happening and offer suggestions to ask the doctors.  My boss has been incredibly understanding.  My co-workers, friends, and family have helped us beyond repayment.  That goes for those in the Southwest, Midwest, and East coast.
As I wrap this up, I apologize for my scattered thoughts.  Erin, as one can tell, has an English degree.  I, on the other hand, have a degree that many players on our college football team also received.  I am also wiping away tears and just trying to keep it together here at home.
I love you Cutie and hope to see you and Brian soon.
Daddy
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Adventure

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This is it…tomorrow is the big day.

I have been spending a lot of time looking over Brian’s food diary and trying to come up with questions to ask the doctors.  I’ve reviewed his medical history and given myself many pep talks.

This past week or so, Brian has had reactions, whether through a change in his bowel habits or hives around his mouth.  He has not had his regular appetite either.  I’m frustrated because I cannot pinpoint the cause.  He hasn’t eaten anything new and I’m afraid the safe foods are turning on him.  He also is drinking fewer bottles.

In response to these events, I go back over his food diary and make notations next to the possible culprits.  I force medicine into him and I pray endlessly that tomorrow will bring answers.

I’ve spoken a few times about Brian’s long list of food allergies.  At home, I have a white board on the fridge with the foods listed.  My hope is that anyone who comes into our house, whether to babysit or for a family party, will be able to refer to the list and help us to keep the unsafe foods away from him.

When I arrived back east, one of the first things I did was go to the store and buy a small poster board.  I then listed all of the unsafe foods.  This poster board follows us everywhere we go.

When my younger cousins have friends over, they even spend time looking over the list.  It seems to be a fascinating topic.

Below are Brian’s unsafe foods, as of today:

  • Dairy
  • Soy
  • Beef
  • Pork
  • Squash
  • Sweet Potato
  • Rasberries
  • Mushrooms
  • Peaches
  • Mustard
  • Cranberries
  • Honey
  • Coconut
  • Almonds
  • Pepper
  • Cashews
  • Celery
  • Chocolate
  • Lettuce
  • Oranges
  • Shrimp
  • Bell Peppers
  • Grapes
  • Olives
  • Spinach
  • Strawberries
  • Cinnamon
  • Pineapple
  • Bananas

When I say, “As of today,” it is because every new day brings the possibility of adding another food to the list.  Being adventurous involves trying a food he hasn’t had before, but then the next twenty-four hours are filled with anxiously watching for any possible signs of a reaction.

Tonight we are going to be adventurous.

It is rare for Brian to request a food he hasn’t had before.  He has learned that if it is okay for him to eat, then I will offer it to him.  But lately, Brian keeps asking for pizza.  This is bizarre because we really have not been around a lot of pizza lately, but he has it in his head.

We went to the store last night and I was ecstatic to find a dairy free, soy free, “you name it” free pizza crust.  This is awesome because I was going to just use Udi’s hamburger buns (the only safe bread we have found so far), but while reaching for the package, I spotted the pizza crust.  Unfortunately, the store did not have the safe cheese, but I’m not sure how I feel about a soy free, dairy free, everything free cheese, so this was not a huge loss.

Tonight Brian will have a chance to try pizza.  It may only have crust and a safe sauce, but it will be a new adventure and something I hope he enjoys.  I also hopes he doesn’t have a reaction.

Some may think I am being careless by giving him something new when I don’t know how he will react.  I guess I am looking at the possibility that my little two year old may not be allowed to eat food for months, and I just want to make him smile.  I want him to sit around a table with his cousins eating pizza.

I will have the epi pen, Benadryl and steroids close by, but tonight Brian will be a normal two year old to those peering in, and tomorrow, hopefully, our world will begin to change for the better.
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One Week

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In seven days I will meet Brian’s doctors.

I am cautiously optimistic.

Don’t get me wrong, I know that coming to Philadelphia is the best course of action for Brian, and for me.  I know that I will walk away with a greater understanding of Eosinophilic Esophagitis, and hopefully, a plan.

I have done my research and I know I am going to meet some of the top doctors, and even more so, work with people who know what they are doing.

The problem is, I have dealt with doctors who pretend to know what they are saying.  I have met some who talked about a “plan” but never followed through.  And, I am “that person.”

Have you ever met someone who may be on his/her deathbed, but he/she still doesn’t go to the doctor, because maybe he/she isn’t sick enough?

I know that Brian is sick (even though right now he looks perfectly healthy).  I have seen the test results to back up the diagnosis.  Even with that knowledge, I still worry if these top doctors will think I am overreacting.

But I’m a parent…what parent doesn’t overreact?

When Addi was little, I heard one too many times, “Oh, this is your first?”  Nothing would illicit a deep rage like that ridiculous question.  Maybe with my first I was too cautious at times, but I always told Matt I would rather pay a copay and have peace of mind, then to take a chance and risk my child’s health or safety.

I know that in one week I will have to put my big girl pants on and fight for my child.

The Children’s Hospital of Philadelphia’s Eosinophilic Clinic has a waiting list.  The fact that Brian has an appointment has to mean that they felt he was worth being seen based on his medical records.  Otherwise, if it wasn’t a big deal, then I would be waiting for a call that an appointment opened up.  This is the rationalization I have told myself.

Still, my heart pounds when I think about sitting with the doctors and being told that he isn’t that bad, or that they don’t believe he is really sick.  This may all stem from the fact that I have heard these sentiments before.

Doctors questioned why I was even there and then used wording and punctuation in Brian’s medical records to insinuate that Matt and I were not being truthful.  These past events have led Brian and I to travel across the country for better care.

This morning Brian woke up with hives around his mouth.  I don’t know what caused them or what to do besides forcing medicine down his throat.  The majority of my days involve reactions of one kind or another.  I know Brian is sick; now I just have to make sure his doctors see it too.

Over the next week I will reread Brian’s medical records, jot down even more questions, refer back to my daily food log, browse through the many pictures and videos documenting reactions, and prepare myself to advocate for Brian.

After all, isn’t that what all overreactive parents do?

Why should we care?

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There are people out there who may be wondering why I am writing this blog.  They may wonder why they should care about what Brian is going through right now.  So many people out there are separated from loved ones and are facing their own battles.  Why should Brian’s matter?

You are right.  It shouldn’t.

Brian is my child and my blessing.  Since being diagnosed with Eosinophilic Esophagitis, it has been my responsibility to learn more about it.  It is my job to record everything he eats, drinks, and feels during a twenty-four hour period.  It is my responsibility to know my child.

Which is exactly why I write this.

From the very beginning, I have had to fight for answers.  I knew something was wrong from the first time he threw up after eating.  I knew long before a hive ever showed on his body.  It goes back to me knowing my child.

When doctors brushed it off as minor allergies and told me he would grow out of it, I could tell there was more wrong and I fought for more tests, to see different specialists.  I didn’t want to be appeased; I wanted someone to care enough to find the truth.

During the past two years, I have been fortunate enough to work with a couple doctors who fought alongside me, but that wasn’t the case with most of the specialists.

I write this blog so that others will take a second look at the issues their children may be facing, whether with food, outside elements, medications, or something else, and this can be said for adults, as well.  Doctors are not always right the first time.  Do not let anyone question that little voice inside of you.  Fight for answers, fight for information, and above all else, do not be afraid to do whatever it takes to find the best treatment available.  You know yourself; you know your children.  No one out there will know better.  Be their advocate, but also important, be an advocate for yourself.

The naysayers and doubters do not matter.  All that matters is giving my child the best chance possible.

There is another reason you should care, because I care.  I would move heaven and earth for my friends and family.  I want to share our journey with others, because I know you care about us.  This has to be true, because total strangers have shown how much they care.

Since arriving on the East coast, I have shared Brian’s story through this blog and with various people I have met.  Complete strangers have offered me kind words, their own similar stories, and asked to pray for Brian and me.  Just today, I met the kindest gentleman, while grabbing a bite to eat.  He played with Brian and he offered an ear to listen.  When I went to pay, he refused and told me to pay it forward.

It may seem silly, but I hope this blog in some small way is paying it forward.

I hope the mother reading this who has a son or daughter who has difficulty breathing, breaks out in hives, or has other weird symptoms after eating certain foods may look into EoE, and search for more answers.

Please do not misunderstand, though.  In no way am I saying everyone with a food allergy has EoE.  Rather, I hope all angles are examined so every child, and adult, can live a happy, healthy life.  EoE is a relatively new diagnosis and my experience has shown that not many doctors know much about it, or consider it to be a possibility.

I believe all who read these words are my silent army.  From across the globe I can feel you standing with me as I fight for Brian.  With all of you beside me, I am strong.

That is why you should care.

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Here We Go Again

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I have a problem.

I cannot stop spoiling my son.

Sometimes I rationalize it by imagining how unfair his life is.

During a conversation last night, I pointed out that Brian doesn’t know what ice cream, chocolate, or cake really are and has no idea what they taste like.  He cannot have a hamburger or hot dog, on top of many other amazing foods.  In fact, he may never know how these things taste.  Whenever I enjoy a meal and explain to Brian that he cannot have any, I feel guilty, which leads to finding something he can enjoy.

Today, the enjoyment comes from Bob.

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While this rationalization is crazy enough, I also cannot help but think of changing him this morning as I pay the cashier.  My poor baby is having another reaction, has been for the past few days, and he is in pain.

But he is a trooper.  When I go to change him, he says, “Mommy, hurts.”  As I finish and I am closing up his diaper, he says, “It’s better.”  Hearing his sweet, little voice telling me everything is better just breaks my heart.

During the last couple days, Brian has not been introduced to any new foods.  In fact, he has not shown much of an appetite for anything but water.  Yet, his body is turning on him.

Now my only choice is to reexamine his “safe foods” and try to determine which is to blame.  This is not the first time we have had to sort through his food diary and try to identify a cause.  I am starting to think there are no safe foods.

This sometimes seems to be the way with EoE patients.  Foods that appeared safe in the beginning suddenly are not, and one day items we know are not safe may be.

Every day I write down everything Brian eats and drinks.  I make notations regarding his diapers and whether he said his stomach hurt.  I include rashes and when he cries out in pain.  Even with all my record keeping, I cannot stop him from reactions.  Sometimes it feels like I am on a merry-go-round that will not stop.  We just keep dealing with the same things over and over, no matter how hard we try to keep him safe.

I pray over and over that the doctors will be able to help him.  When that day comes, I will be the one to tell him it is all better.



SIDE NOTE: 

Today I want to thank my husband.

While Brian and I are dealing with life away from home, he is keeping things running and providing stable ground for Addison. I am beyond lucky to be blessed with an amazing husband and father to our children.  Things are not always easy, which is cliche to say, but even with the struggles we face, we come out on top.

This has to be the biggest challenge we have faced yet.

Ten years ago we spent six weeks apart while we were dating, but this is different.  Now we are married and have children.  Life is different.

I hope he knows how grateful I am to him for everything he does and everything he is doing for Addi.

I miss him and I wish I could throw my arms around him and wish him a very happy anniversary.

Thank you for saying “I do” eight years ago and every day since.  I love you.

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Speechless

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I began this blog and Brian’s website one week ago.  During that time, I have been overwhelmed by the outpouring of support from family, friends and strangers.

It is a scary idea to open up your private world to the public.

The past seven days have brought well wishes, prayers and offers of support.  Many have reached out with “my son has this condition,” or “my brother and nephew both have it,” or “I suffered these same symptoms my entire life.”  Each person who shows an understanding of what we are dealing with is a blessing to me.

I apologize for not immediately responding to some of the emails, messages and phone calls.  Quite honestly, I am overwhelmed.  And, like I said in a previous post, some days are hard.

Even with all the support, it is hard not to feel alone.

But please, do not stop reaching out.  Please continue to share Brian’s story with others.  If all I accomplish is to bring a small amount of awareness to Eosinophilic Esophagitis, then I will feel like I made a difference.

Messages say that I am strong and that Brian is lucky to have me for a mom.  I am humbled my these thoughts and they give me strength when I feel lost.

In addition to bringing awareness to EoE, I hope I can show others it is okay to be overwhelmed.  It is okay to hurt when you are away from friends and family.  It is okay to fall apart.

Just remember, there are so many out there who are fighting wars, and some of the battles may resemble your own.

I met a mother yesterday of an amazing young woman.  Her daughter is fighting her own battles and is an image of strength.  She may not be dealing with the same condition, but her mom has been through hospitals, specialists, feeding tubes and struggles.  Five minutes of talking with her gave me renewed strength and, hopefully, a new source of information.  I encourage others to learn more about this young woman and her mother by following “Kennedy’s Cause” on Facebook.

Everyone we meet has something to offer.  Every story sent to me adds new insight.  Every word of encouragement drives me forward.

Thank you for your support.  Thank you for sharing our page.  Thank you for reminding me that I am not alone, and that I can do this, even when I might forget.

Eating Out

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He is enjoying pineapple in this picture, which he later reacted to. Add pineapple to the unsafe list.

When Addison was born, I could take her EVERYWHERE.

We would go out to eat and things were easy, because she was used to going everywhere with me.  Once she was able to eat, I would order meals that I could share with her.  Even if she acted up, compared to now, things were easy.

Brian is an entirely different story.

Since Brian was born early, we limited his time in public places to the bare necessities.  Eating out never happened.

After Brian began to show allergies to multiple foods, eating out became even harder.  Unlike with Addi, who was happy to sit and eat everything put in front of her, I didn’t have that luxury with Brian.  It became more difficult to entertain Brian, especially when he tired of the food I brought for him.

Through my research, I stumbled across tips for eating out with a child who has Eosinophilic Esophagitis.  There are some great ideas like:

  • Bring your own food – This is a wonderful option and one I have done numerous times, but isn’t the whole point of eating out so I do not have to cook?  Plus, I either have to cook the food well ahead of time, in order to be prepared, or ask the kitchen to heat the food for me.  The latter is easy when eating at a restaurant where you know the owner, or visit frequently, but most establishments aren’t always as eager to help.  Plus, if your child decides to boycott that type of food for the day, you are stuck (this has happened more times than I can count).
  • Call ahead and speak with the manager/chef – Matt and I attended a rehearsal dinner with Brian where there was a set menu.  Because we were driving from out of state and going straight from the rehearsal to the dinner, I had to use this route.  I called and spoke to the manager at the restaurant, who was helpful beyond belief.  I explained the strictness of Brian’s diet (chicken has to be PLAIN and not cooked in any oil, pasta had to be dairy free, soy free and without any oil or seasoning).  She immediately spoke to the chef and by the time we arrived, she had a special dinner ready for Brian.  This all worked out great, but it helped because there was a plan.  It is harder to take this option when just out and about and you decide to stop for something to eat.  In those cases, I have given very strict instructions to the waitress, but that doesn’t always mean everything will be okay.
  • Do not eat out – Sadly, this is the story of our lives.  We very rarely take Brian out to eat with us, because 1. He is not used to being at a restaurant and becomes restless easily, meaning I am more preoccupied with keeping him quiet than enjoying myself, and 2. No matter how hard I plan or all the precautions I take, sometimes things go wrong.

Today is a perfect example.

I always have snacks with me for Brian to eat.  Today, he let it be known he was tired of said snacks and said, “No” to every suggestion I gave him.  I always look at the kids menu first and put an order in for Brian immediately, so as to keep him entertained.  Today was not any different, and I quickly examined the kid’s menu for a possible option.  Usually my go to is plain pasta.  This was not on the menu, so I asked the waitress about the grilled chicken.  I told her that chicken needed to be plain without any oils or seasonings.  I asked if the fries were cooked in soybean oil, olive oil or vegetable oil, and she said no, which made them an option.  She put the order in and Brian was served well before the rest of us.

I’m sure the other mothers out there are familiar with how a mom eats.  I have been teased when eating and asked if I even tasted my food.  I do not want to ruin the experience for anyone else, so I make sure my attention is focused on Brian and keeping him quiet and entertained.

He was doing pretty well, and devoured his chicken and fries.

It was not until I was almost finished eating that I noticed the first signs.  Brian was having a reaction.

Sometimes it starts out so small, you just might miss it, but sadly, I have it engrained in me to watch for it now.

At first it was a tiny red spot near the corner of his mouth.  To most it would look like a scratch.  Before long, it spread to the area under his mouth.  Tiny, red hives now surrounded his mouth.  I took the food away from him and made sure he drank a lot of water to help counter any initial effects.

Thankfully, this was not bad.  I honestly do not feel that there was anything wrong with the meal he was served.  The waitress was very apologetic and said she told the cook to clean everything and keep it safe.  The reality is that this is not possible in a restaurant.  Even if they try their hardest, there is still a chance of cross-contamination, and I really believe that is what happened.  It has happened before, and if we plan on eating out anymore, it most likely will happen again.

Although a dose of Benadryl has removed any visible sign, I know this is not the end of the reaction.  There is still a chance Brian will react in other ways over the next few hours.  For now, I will mark down in my notebook what he has eaten and make note of the reaction.  The hardest part is not being able to identify the exact trigger.

I wish I could put Brian in a bubble and keep him safe from any trigger.  Instead, I continue to try my hardest and kick myself when the best intentions go astray.

My only hope is someday Brian and I will be able to enjoy a meal in a restaurant together.

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Beginning signs of a reaction.

Absence Makes the Heart Grow Fonder

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I am not sure who first said, “Absence makes the heart grow fonder,” (I did try looking it up…must be the English major in me) but whoever it was, was dead wrong.

Absence makes the heart hurt.  Bad.

After learning of Brian’s diagnosis, Matt and I sat down to discuss our options.  It had been recommended to us multiple times that we take Brian out of the state for treatment, so I researched the best options.

Children’s Hospital of Philadelphia (CHOP) has an amazing Eosinophilic Esophagitis clinic, and it made the most sense because it is close to family.  We talked to our insurance representative and found that “guesting” was the best option for us.  This means that Brian and I have to reside here for at least sixty days.

We have an appointment scheduled with CHOP and I asked to be placed on the cancellation list.  And now, we wait.  While the guesting requires sixty days, after his appointment there may be tests and more appointments, requiring us to be here even longer.

Before I go any farther, I have to give thanks to my extended family.  I have cousins who have opened their homes to Brian and me.  I know one extra person can disrupt a routine, but also adding a toddler to the mix can be overwhelming.  They have been wonderful and have done more to help make the best out of a difficult situation than I probably deserve.  I am humbled by their love and support.  One cousin has bounced from bed to bed to couch so that Brian and I can have a bed to sleep in each night.  On top of that, I am amazed by their willingness to learn more about Brian’s condition and help monitor what he eats and drinks.  They have even begun looking at ingredient lists so he is included at dinner.

Even with all the support, my heart still hurts.  I miss my husband and baby girl.

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Don’t get me wrong, I love the bonding time Brian and I are sharing.

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Even more than bonding with me, Brian is LOVING being the center of attention.  It has been a while since there was a little one running around here and he is eating up all the time they are spending with him.

But I worry about him not seeing his daddy and sissy.

With modern technology, we are able to FaceTime every day.  Usually when Matt or Addi call, Brian is racing around and playing.  It is hard to settle him down long enough for a conversation.  At most, he runs full force into the phone and gives Matt or Addi a “hug.”  It is the cutest thing I have ever seen.  Unlike me, he doesn’t seem to realize how long we have been apart.

Brian and I arrived on Sunday, June 14.  To me, it seems like we have been gone forever.  There are good days and bad days for me, but poor Addi just doesn’t understand.  Some days she calls in tears, begging me to come home.  Other times she tells people I will be picking her up this weekend and taking her home.  She has heard talk of “60 days,” and that number has stuck in her head as a definite.  I don’t know how to tell her it may be longer.

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She has been staying with my sister and brother-in-law (as long as I live, I will NEVER be able to repay them for everything they are doing), and spends time with Matt on his days off.  Matt makes sure to visit with her every day and tries to take her out on special “Daddy/Daughter” dates.  Besides that, she fills her days with swim lessons, summer movies, Irish dance, fun visits with other family members and playing with her cousins.  I keep hoping she is entertained enough to not notice the days passing by.

I can’t pretend though…some nights I just cry.

I know I am living an impossible situation.  This decision allows for the best possible future for Brian, but it means being away from Addi.  I want Brian to have a happy, healthy life, but I fall apart a little more inside every time I hear Addi cry.

There is no way for me to win.  Whatever decision I make, one child will suffer.

Hopefully, someday Addi will understand why Brian and I are living so far away.  Hopefully, she will forgive me for everything I am missing.  Hopefully, I will forgive myself.

Until then, I will continue to be grateful to family who have offered beds, food and hugs when I need it most.  I send Matt and Addi happy pictures of Brian and me, and count the days until I can hold them in my arms.

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Like Father, Like Son

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I am fortunate to have an amazing husband who works very hard so I am able to stay home with our kids.  Now with Brian’s food allergies, being home is the safest place for him.

Since I am not working, I am the one to take Brian to his many specialists appointments.  When Eosinophilic Esophagitis first was mentioned, I could not pronounce the word, let alone remember how to say it to tell Matt what others suspected based on Brian’s symptoms.

It was not until I received the first confirmation that Matt said, “I have that, too.”

Matt does not suffer from food allergies or show many of the symptoms Brian does.  Over the last year, I have learned that those diagnosed as an adult have very different characteristics.  Matt suffers from horrible reflux, sometimes causing him to dry heave, and had an endoscopy to confirm his diagnosis.  He deals with horrible external allergies and an overactive immune system.  Some foods may cause an increase in reflux, but technically he is not allergic to them.  After being diagnosed, he took the recommended medication and now has endoscopies every few years to make sure his esophagus looks healthy.

I began my research of EoE after the first diagnosis, and learned that it is common for cases of EoE to run in a family.  In some ways, I felt like this gave us a leg up because at least Matt knows what an eosinophil is, even if I don’t.

Of course, nothing about this disease is simple.

It can be diagnosed at any age and at various stages.  Babies, toddlers and children seem to have more food allergies and difficulty eating.  Young adults and adults tend to deal with more reflux and difficulty swallowing.  Since there is still a lot for doctors and scientists to learn about this disease, none of this is a constant.  Everything I have read lists plenty of symptoms and places them in Child vs Adult categories, but that doesn’t mean they cannot cross over to the other side.

While it is helpful to have an idea where Brian’s EoE came from and having a foundation to learn more, the major difficulty comes with Brian not being able to explain what he is feeling.

If Matt’s reflux begins to act up, he knows which medication to take and the problem is solved, at least for the time being.  When Brian is in pain or doesn’t feel well, he acts out by aggressively hitting or throwing himself at the furniture, or being crankier than normal.  He may point to his stomach and say hurt, or cry out when he is being changed, but we don’t always understand or know what to do to help him feel better.  The most horrible feeling in the world is to watch your child writhe in pain and not have any idea of how to comfort him.

Matt once watched as I held Brian for almost an hour as he screamed and kicked.  There wasn’t anything we could do to help him.  If we had taken him to the hospital, they would have drugged him and put him through multiple tests, because, as we have learned quickly, very few people seem to know anything about this disease and helpful medications are limited.

After Brian’s second endoscopy/colonoscopy, Brian came out of anesthesia violent and I tried my best to hold him.  Matt took a picture of Brian thrashing in my arms.  When I asked him why, he said, “Someday he is going to be mean to you, and I want him to know what you went through for him.”

Someday Brian will grow up and may go through the teenage rebellious stage, but if that day comes and he is living a productive, healthy life, then that means we have found a solution to his pain.  That will make all the struggles worth it.

He has what???

cropped-img_1245.jpgWhenever I try to tell people about Brian’s condition, I usually can expect to be asked two questions: 1. What is that? and 2. How do you pronounce it?  After a brief explanation, I can then count on hearing, “He’ll grow out of it.”

Let me begin with saying, Brian will NEVER grow out of this.

Hopefully, someday, we will be able to reintroduce some foods back into his diet, but Eosinophilic Esophagitis is a chronic illness.  He will deal with the side effects, tests, medications and “danger” foods for the rest of his life.

Here is a brief explanation of this condition, along with a phonetic spelling.  For more information, please visit one of the these sites:

  • apfed.org
  • curedfoundation.org
  • chop.edu/conditions-diseases/eosinophilic-esophagitis#.VZrTbs5wZD4

Eosinophilic (e-o-sin-o-fil-ik) Esophagitis (e-so-fa-gi-tis), referred to as EoE, happens when white blood cells, known as eosinophils, cause injury and inflammation to the esophagus (tube that connects the mouth to the stomach).  Eosinophils move into an area of the body when it is attacked by an allergy-triggering food or airborne allergen.  They release a variety of toxins to combat the “invader,” but when the body produces too many eosinophils, it can cause chronic inflammation, which leads to tissue damage.  If you have seasonal allergies, eosinophils are in your nose; if you have asthma, they are in your lungs; and if you have EoE, they are in your esophagus.

In order to identify which type of disorder is present, a biopsy of the esophagus is taken and examined.  If the biopsy shows an elevation or strong presence of eosinophils, then the patient is diagnosed with EoE.  It is important to note that the number of eosinophils does not mean one patient is worse than another. Someone with a high number may not suffer with the same symptoms as someone with a borderline number.

EoE is considered a rare disease, although more cases are being diagnosed every year.  It also is a relatively new disease, only becoming really apparent in the last decade.  Below are a few fast facts/trademarks of EoE, courtesy of apfed.org:

  • People with EoE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema.
  • EoE affects people of all ages and ethnic backgrounds.
  • Males are more commonly affected than females.
  • In certain families, there may be an inherited (genetic) tendency.
  • In individuals with EoE, the eosinophils cause injury to the tissue in the esophagus.
  • EoE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve. EoE may also be triggered by other environmental factors that researchers are beginning to understand.
  • A gastroenterologist can diagnose EoE based on clinical symptoms, number of eosinophils present, and tissue inflammation.

Patients have continued symptoms, although esophageal eosinophil levels may change over time. Complications, including esophageal strictures and food impactions, may occur. In very rare cases, forceful vomiting, prolonged food impactions (becoming stuck) and esophageal dilations may result in a perforation or tear of the esophagus which needs immediate medical attention. Currently treatment of EoE is directed at controlling symptoms, reducing eosinophil levels in the tissue, and preventing complications of the disease, such as food impactions (http://patients.gi.org/topics/eosinophilic-esophagitis/).

As a family, we wanted Brian to receive the best care possible.  We researched various children’s hospitals and found Children’s Hospital of Philadelphia to be in the top four.  After weeks of putting together medical records, figuring out our insurance and discussing options, Brian and I flew from Phoenix to Philadelphia on a redeye (thankfully he slept the whole time!).  Now, we are waiting for our appointment.

I’m sure Brian will need another endoscopy very soon and the main course of treatment will be removing all food from his diet and placing him on an elemental formula diet for one to six months, so the esophagus can heal.  After that, food most likely will be introduced one at a time and more tests done to ensure his esophagus is okay.  Of course, these are my assumptions based on research, and I will not know for sure until the doctors give us a game plan.

One thing is for sure; without treatment, the esophagus will become more damaged, leading to complications with swallowing and potential tears requiring immediate medical attention.  Already, the damage to his esophagus can be heard through the hoarseness of his voice.

But we are lucky.  Brian looks happy and healthy.  His main source of nutrition and calories comes from his formula.  It is because of his formula that he finally made it on to the growth chart at almost two years of age.  One of his doctors told me once, “We cannot label him failure to thrive, because he was never thriving.”  Now that he is on the chart, we don’t want to risk falling off of it.  I have received wonderful advice and was forewarned that a feeding tube may be in our future.  For the time being, I can pray for the best possible outcomes and load him up on plain pasta, apples, rice and chicken.

Things sometimes look bleak, but I know Brian will be okay.  If we have to remove all food, things will be tough, but we will manage.  If he isn’t able to reintroduce some of his “unsafe” foods, I will be more creative with what he can eat.  If he needs a feeding tube, I will learn everything I can about tube feeding and keeping it free of infection.  When I was pregnant, I prayed for a healthy baby.  Now I am doing what I can to make that a reality.  Brian is a miracle, and I will do whatever it takes to ensure he has as normal a life as possible.