So, I'm Not the Only One?

It's been 6,816 miles and more than two months since we've arrived to make Westport, Connecticut our new home.  It's been a tough ride for me.  We haven't lived in the States for five years and I miss our old life and friends and routine back in Dubai.  In many ways, Zane has been my rock.  His illness has gifted him with resilience and optimism that is infectious.  He is also a pure blooded extrovert.  The only thing he loves more than people . . . is meeting new people.  He is as gregarious as it gets.  He does miss Dubai as well and does express that.  But, he sees so much positivity here.  I have asked him if he likes his new or old school better.  He says, "That's a hard question because I like them both."

When we arrived in Dubai, Zane was a year old and was diagnosed when he was a year and a half.  So, everyone in Dubai he grew up with also grew up with his EE.  They knew him when he was symptomatic.  They supported us when he was diagnosed.  They learned along with us what his diagnosis meant.  They helped us through food trials and cheered when he had a clean biopsy.  They cried for him when he had his g-tube surgery and watched him in admiration when he got strong again.  The kids at school didn't blink twice when he was being tube fed in his class at school.  Although, it did bother him at times that he was the only child at his school with a special need.  He was the only one that was different.

So, Zane's major source of anxiety was that first day we went to visit his new school.  He was terrified.  He didn't want to go and kept saying that he wanted to take out his feeding tube.  He was so worried that kids in his new school wouldn't like or accept him because he can't eat like they can.  He was afraid that they would make fun of him for having a feeding tube.  I had him hooked up to his feed pack when we arrived at school.  He begged me to disconnect him so the other kids wouldn't see he has a feeding tube.  So I did.

Normally, Zane is a chatter box and is pure kinetic energy.  But, walking into that school for the first time he was silent and barely moved.  He held tightly onto my hand.  I could feel his hand shaking in mine.  I could feel his tension and anxiety.  His principal walked us to the nurse's office and then to his new class room.  He was terrified and would not let go of me.  The kids in the class were so excited to have a new student and were all clamoring around him introducing themselves.  They were all asking Zane a million questions all at once.  Zane was overwhelmed and just smiled silently.  He seemed mentally preoccupied.  At one point, Zane's teacher said, "Zane, what's your favorite book to read?"

"I eat through a tube in my tummy, " he responded.

Now, imagine being a five year old boy in a new school for the first time.  You have a feeding tube.  In your world that is the only thing that matters because no one else out there is like you.  Everyone is surrounding you.  You are an oddity.  You feel like you're trapped in a fishbowl.  All Zane was thinking about was that feeding tube in his stomach.  He couldn't enjoy the experience or take anything else in until he knew how the others would or wouldn't accept him for not being able to eat.

Then all of a sudden, Zane finally noticed that there were other kids that had special needs like him.  One boy in the class had cochlear implants and the teacher wore a microphone that transmitted her voice to his implant so he could hear her.  Zane looked so relieved.  He said, "Mommy, that boy has a tube in his head and I have one in my tummy."  That little boy became Zane's hero.  He sat next to him everyday.  Zane talked about him constantly and they shared playdates.  He later learned that there was a boy with an insulin pump.  There were kids with facial and physical deformities.  There were kids with learning disabilities.  "I'm not the only one, Mommy!" he said when he came home from school one day.  When he recently met a boy with Down Syndrome he said, "I'm lucky, aren't I, Mommy?  My disease isn't so bad."

We recently celebrated Zane's 6th birthday.  I can't believe how far that little boy has come in six short years.  It's been an amazing ride and I am so incredibly blessed to have him for my son.  We'll be starting food trials again soon because the steroids aren't cutting it anymore and Zane wants more diversity in his diet.  It'll be tough.  I know the emotional roller coaster ride it can be to have to trial foods.  But, hopefully we can find things that won't make him sick and we can get this EE back into remission.  So, send lots of positive vibes and healing energy Zane's way.  We'll be needing it.

Signing off from the States.
Nancy
An EoE mom

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Unthinkable

Written on February 22, 2011

It has been almost three years to the day Zane was diagnosed with Eosinophilic Esophagitis.  I spent the last two and a half of those years living in fear.  Initially, I feared Zane would be allergic to all foods.  A few months after his diagnosis we learned he is, in fact, allergic to everything.  Then I feared he would never outgrow those allergies.  I feared my daughter would also have the disease.  I feared the disease would spread.  One of my biggest fears, however, was that Zane would have to be fed through a feeding tube.  I previously wrote that a feeding tube might be the one thing that “puts me over the edge.”

About forty minutes ago, I kissed Zane goodbye so he could undergo his fourth surgery and his fourteenth endoscopy.  When he returns to me he will have his peg and I will have to learn how to administer his feeds five times a day through his tube.  I will have to learn how to clean it and care for it.  I will have to learn to deal with the comments and/or ignorance from others.  Although, Zane hasn’t come back from surgery yet, I am here to tell you that there is life after the tube.  It was a long road for me to get here.  It was a long process to be okay with this decision.  But, I finally am and it is so liberating.

At Zane’s weight in on February 21^st he weighed 15.6 kilos (34.95 lbs) with his clothes on.  When we were last here in Switzerland in November of 2010, Zane weighed 17.9 kilos (39.38 lbs) with his clothing off.  So, he lost quite a bit of weight.  But, it wasn’t a rapid weight loss – it was a long and agonizing process.  One which created a lot of tension between Zane and I because I was constantly nagging him to drink his formula and eat some food and he constantly refused.  His hunger slowly turned into starvation.

In the early 80s my father glued himself to the television news for weeks to watch hundreds of thousands of Ethiopians die of a famine of “Biblical” proportions, as one BBC reporter famously explained it.  I remember one scene quite vividly.  Huge flat bed trucks arrived in one refugee village to deliver bags of wheat emboldened with the American flag.  Ethiopians flocked to them to receive their share of wheat.  They quickly became aggressive and two Ethiopians began to fight over the same bag.  Each person pulled on the opposite end of the bag until it tore in half and wheat flew everywhere.  Other Ethiopians quickly flung themselves to the ground to collect what had fallen.  I remember watching thinking that they were acting like complete savages.  But, now I know better.

Hunger is quite a powerful human feeling.  It is persistent and nagging.  It will rumble in your stomach unabated with determination until it is fully satisfied.  It is enough to drive a person mad.  Our basic animal instincts kick in and you will do anything or eat anything to survive.  I’ve seen it in Zane.  He spent nearly a year on an elemental only diet.  He begged for food.  At a park once, he spotted a kid with a bag of popcorn.  Zane’s stare immediately locked in on the bag.  He ran straight for the boy and took him down with one quick unsuspecting blow to get to the popcorn.  The boy fell to the ground and was immediately stunned into compliance.  He was merely collateral damage.  The elemental only diet was too strict and harsh for me to maintain.  I wasn’t strong enough to watch my son crave food every minute of his life until it became his one and only obsession.  So, I gave up.

This time it was Zane who gave up.  It started in November when he stopped drinking his Neocate Splash.  Then by January he stopped drinking his Elecare.  By mid-January he was eating less and less food.  It was a gradual starvation until he would go a whole day without food and would only drink a few sips here and there of his nasty, foul-tasting formula.  He was so tired of it that he would gag at the site or smell of the Elecare.  Initially, he was just a bit crabby.  Then he gradually became a bit more aggressive and unpredictable.  He was angry and frequently lashed out.  Some days he would spontaneously combust into the most horrible tantrums lasting hours until he just fell asleep from exhaustion.  A few days before coming to Switzerland he became lethargic.  He didn’t want to play as much and would fall asleep in odd places at odd times.  When he wasn’t sleeping you never knew what would set off the next big melt down.  One night he asked for rice pasta with salt and butter.  I handed it to him on his favorite blue plate.

                “That’s not what I wanted,” he yelled through tears.

                “Tell me what you want, Zane,” I said.

But once the dam broke there was no holding back the deluge.  He would go from unwanted pasta to hating school to no longer liking to wear a particular shirt.  His thoughts and emotions were random and scattered.  That is what hunger does to you.  You can’t think straight anymore.  Imagine having a small itch that can never be scratched.  It starts off small but if you don’t scratch it, it eventually takes on a life of its own.  That is what hunger is to Zane and others who suffer from eosinophilic gastro-intestinal disorders.  So, an intervention was desperately needed.

So, here I am . . .  taking on what was totally unthinkable only three years ago.  It highlights the strange dichotomy that exists when dealing with a chronic illness.  On the one hand, you have to constantly battle with the disease while also learning to live with it and accept it for what it is.  I’m trying my best to be strong and accept things.  I am also trying not to fear what hasn’t or might not even happen. 

It has been a few days after surgery now.  It will take a month and a half for Zane to gain back the weight he lost.  I already see him returning to the kid he was before hunger took over his body.  For the first time in his short little life he is no longer hungry.  He actually feels full.  His energy level is slowly coming back.  He smiles more and jokes about silly things only four year old boys think are funny. 

“Mommy, look, I can eat two things at the same time,” he said as he ate a rice cake while the nurse administered his feed.

That’s my boy.

Hate to Say "I Told You So, but . . ."

Childhood Autism Now Firmly Linked to Environment

http://www.huffingtonpost.com/stephen-barrie-nd/child-autism-epidemic-fir_b_696179.html

This article ties in nicely to a previous post of mine entitled, "Less is More."  This is an easy read and touches on many of the toxins that are also likely to be a driving force in the rise of EGIDs in the United States.

"Since the '70's, there has been a 60-fold increase in American children with autism. Currently one in every 100 U.S. children and one in every 58 boys are being diagnosed with autism. That's over 2.6 percent of all male children in America. The number of autistic children expected to reach adulthood in the next 10 years along with their caregivers will exceed the population of Rhode Island and cost an estimated $27 billion in additional care beyond the almost $60 billion being spent on current autism-related costs. (1,2)" 

Haven't We Been Here Before?

When Zane first became symptomatic it was difficult getting doctors and others to believe that there was actually something seriously wrong.  He appeared healthy and had this surprisingly unyielding energy level.  And although he was frequently vomiting and struggling with food he was always this happy-go-lucky kid with an extroverted disposition.  Doctors assured me that his behavior was not of a sick child.  I knew differently though.  Eight endoscopies, three surgeries, four hospital stays and countless visits to the emergency room later have revealed little about this new and emerging disorder.

The picture above is of Zane immediately after his last endoscopy in August.  You can see the band-aids from where the blood was drawn and his finger pricked.  His endoscopy revealed some furrowing in his esophagus since we put him back on his polmicort slurry of only .50 mg /day (.25mg in the morning and evening).  I knew that there would be eosinophils when the doctor said that she saw the furrows.  He was vomiting occassionally as well which is another indication that not all is well.  The morning of the endoscopy he woke up at 5 a.m. complaining of leg and joint pain.  More than a year ago his leg and joint pain was so bad that Zane was often unable to walk or walked with a severe limp.  Several specialists told me that it was nothing.  They told me that I was exaggerating things or that Zane was probably faking it to get attention.  There is nothing worse than a doctor who explains away his/her own ignorance by blaming some pathetic psychological need for attention by the patient.  When I mentioned it to Dr. Chehade at Mt. Sinai last year she denied that the bone and joint pain were related to the disorder.  One year later, she is realizing otherwise.  She now acknowledges that many EE patients suffer with similar symptoms that are medically unexplainable at this point.

Zane's biopsy revealed that he had about 18 - 20 eosinophils per high power field.  There was also some strange irritation in the stomach and intestines.  She suggested that we go back to the 1 mg / day of polmicort (.50 mg  in the morning and evening) and restart 30 mg / day of prevacid just in case the stomach and intestinal irritation is from acid reflux.  She mentioned as an aside that she hopes the disease isn't spreading to other parts of his gastro-intestinal system.  I hope so as well.  It is one of my biggest fears.  Or worse - that the eosinophils could spread to his blood.  So, we will try the new regimine and do another biopsy in October / November in Switzerland and see how things go for Zane.  Fingers crossed that we get a clean biopsy on the next go ahead.

For the first time as well I took Selma to see a GI specialist.  Before I explain why I should tell you that I found out that I was pregnant with Selma one week before Zane was diagnosed with EE.  When I went to see the doctorfor Zane's diagnosis she immediately began to go into how if my first child is born with this disease that every child I have thereafter is at high risk for it as well.  The GI specialist as well as the allergist threw out numbers and statistics at me but I was in a daze and don't recall them.  It was quite high though.  And I know many EE families with multiple children suffering from the disorder.  Girls are less likely to get it because for some reason 80% of cases are in boys.  So, she is at a reduced risk as a result of her gender but is still at risk nonetheless.

Since birth she has had some minor feeding issues, goes through periods of vomiting and diahrea and her stomach is constantly distended.  She also has battles with eczema.  She has never tested positive for allergies.  But, the distended stomach is definitely becoming and issue for her and bothers her quite frequently.  So, just as Zane was, she was tested for celiac disease and we are awaiting the results of that test.  There is something wrong with her though.  I don't know if it rises to the level of severity as an EGID but there is something wrong.  Hopefully it is something minor in her diet that is bothering her that we can eliminate and just move on with our lives.

When I sat there in the hospital waiting for her blood to be drawn I was nervous as I was with Zane.  I remember thinking, "Haven't I been here before?"  It's frustrating but a bit more difficult this time because Selma's symptoms are far more subtle than Zane's violent vomiting.  But, because her symptoms are so subtle many doctors also are ignoring the need for further investigation.  Dr. Chehade understands that she is at risk because Zane has the disease so she agreed to see Selma for that reason I am sure.  But doctors before Dr. Chehade have suggested to me that perhaps because of Zane that I a bit too sensitive and should relax.  One woman told me that I'm in "fight or flight" mode because of my son's illness and that I should just let my kids be kids.

How do I just relax?  If I'm  investigating every symptom then I'm hyper-sensitive.  If I don't then I'm neglectful - especially in light of our context.  I know that I'm over anxious about things because of Zane being sick but how do you "just relax" when you deal with it every single day?  How do you prevent that from influencing how you parent or advocate on your other child's behalf?  I don't think that I can.

Hopefully it is just nothing.  I am not as worried as I was when Zane was symptomatic but it is still something that is frequently in the back of my mind.  It's still something that needs to be dealt with.  Not knowing is the worst part of all.

The Fast of a Lifetime

My article about Zane's struggle with EE has been published on altmuslim.com

http://www.altmuslim.com/a/a/a/3767

Sad but Poignant Article about One Girl's Struggle with EE

The Kansas City Star recently did an article about a young girl that committed suicide last year who had been suffering with EE.  I think about this young girl frequently because I see the torture in my own son with wanting to eat but not being able to do so.  I also know the pain that he has to endure as a result of it all.  Although my son it still quite young, I know that he will have to endure a certain amount of social isolation as well as a result of not being able to eat food.  I wonder how his peer will treat him.  I hope you get a chance to read the article.

http://www.kansascity.com/2010/05/22/1964255/redemption-rises-out-of-girls.html