The Ugly...

One thing that nobody likes to talk about is how hard it is on a relationship to have a child that is struggling medically.  Tom and I are doing very well, I think, but we have our fair share of strife.  We don't always agree on how to treat him, or where to take him, or how to respond to him.  We're both tired, we both desperately need a break, and we both have an insane burning desire to make this angry little human happy again.

We are also not good at the same things.  I can say with only the merest traces of self-promotion that I excel in the medical world.  I know what I'm doing and what I want, and how to find the resources to get there.  All things Doctorly stress Tom out, and stress quickly turns into anger.  I "fondly" remember Aidan's Upper GI X-Ray.  The patient ahead of Aidan was refusing to drink the Barium, and things got about half an hour behind schedule.  I truly thought he might lose his mind.

But, almost in answer to my no-nonsense "do what must be done" approach, Tom is the big convincer.  Aidan will drink from his big boy cup for daddy.  He'll settle down for daddy.  He'll take even the yuckiest medicine for daddy.   I'm eternally thankful for the comfort Aidan finds in Tom, even while it breaks my heart that I am not the one providing it.

Unfortunately, for us (and I'd venture to guess for many others too), the most common way that all of our frustrations manifest is The Handoff.  Picture for me, if you will, the following: Mr. Baby is crying.  He's inconsolable.  Mama tries to hold him, but he doesn't want to be held.  Mama tries to soothe him, but he doesn't want to be soothed.  Mama feels powerless to help, frustrated, and needs to do something.  Surely daddy can fix this.

 Hello, role reversal.

I'm admitting this for the first time, live on the internet, and please don't hate me for it.  I'm by far the worst offender here.  When Aidan hurts, I hurt, and more than anything I don't want to cause him more pain.  Intellectually, I know that I am just as capable of soothing Aidan as Tom.  I can handle illnesses, injuries, and tantrums without batting an eye.  But when the emotional side kicks in, and I just *know* he blames me for ruining his tiny little life - I hand him over and run for cover.  It's my single largest parental failure.  Please tell me I'm not the only one...

I like your pretty bracelet...

A sweet little girl in the CHOP waiting room was very impressed by Aidan’s bling.  It’s so shiny, mommy!  It’s just like your pretty bracelet!  Can I get one too?

I think kids are born to admire.  What a cute, teeny baby!  What a shiny bracelet!   What a cool special lunchtime chair!  Little kids seem to just understand to look for what’s the same, rather than what’s different.  Aidan’s just another kid – he’s silly, he’s loud, he likes to run, he doesn’t like having his nose wiped.  He’s exactly like them, except for when he’s a little different.  Kids don’t pity him, or worry that they’re going to say the “wrong” thing. They look, they accept, and they play.

I wish adults saw him that way.   They don’t.  Some days, even I don’t.  It’s a struggle.  It’s so ingrained in us to point out what’s different and to internalize it.  I can’t imagine how awful life would be if I couldn’t eat pizza.  It would be – for me.  I love pizza.  But for him?  Not so awful.  He doesn’t love pizza.  He loves laughing, and he loves running, and he loves playing – and none of those things are going away. 

When I look at that arm, I see a little boy who needs more attention and more care.  But that little girl saw shiny and pretty.  And do you know what Aidan sees when he looks down?  An arm.

For seriousness's sake, Aidan does wear MedicAlert's Child's Steel Bracelet.  It's wonderful for peace of mind - a simple call to MedicAlert will tell first responders of his allergies, his condition, and his emergency contacts.

For space's sake (he's tiny, and so is his bracelet) we chose to have the following engraved, along with his MedicAlert ID number.  These are the most emergent of his issues - the EGIDs can be learned of later - but these are the thing that will alter the way care is provided in an emergency situation.

FOOD
INDUCED
ANAPHYLAXIS
REACTIVE AIRWAY
DISEASE.

They are so very affordable - we highly recommend MedicAlert.  They'll help you determine what to engrave and how to size the bracelet.  And they're oh so stylish!

Two Weeks In - Steroid Treatment

I mentioned last week that we were going to be discontinuing steroid treatments for Aidan because they weren't helping and we couldn't tolerate the side effects.

To that end, we reduced his dose from 3ml per day to 2ml per day.  This week, after the obligatory call to the GI nurse, we reduced it again to 1ml per day.  I anticipate his last dose being administered on Sunday.

So everything's proceeding according to plan.  Things should be good, we should be happy.  Famous last words, which bring us to our weekly update.


So, how are things going this week?

His anger has subsided.  He's a little less wildly emotional.  These are either signs that the weaning off process is going well, or that he's getting used to the pred.  I don't know which, and I don't know what to hope for.

Here's where it gets very sticky.  He's eating.  He's eating a lot.  He MUST be gaining weight, because he has the steroid-hunger like it's his job.  He's finishing all three bottles at school (5oz each), plus usually a bottle at home before bed, a bottle in the middle of the night, and a bottle in the (later) middle of the night.  Sometimes, we add an extra late-late-middle-of-night bottle in there.

The good part?  That makes for 30-35 ounces of formula per day.  He's never in his life eaten so much.  There's no WAY he's not gaining weight on this much Neocate.

The bad part?  He's not sleeping.  His 3h nap has dwindled to 1 hour.  He stays up late crying and thrashing in bed (so, okay, maybe the anger's not entirely gone).  He wakes up 2 or 3 times per night STARVING and needing to be fed.  He's not a very happy little guy, and we're not very happy little parents.

I apologize for ending on a negative note - but here's to hoping next week looks up!

When will he get better?

Variations on this are probably the second most often asked questions (right after "Uh, so, what's wrong with him anyway?").  Will he ever get better?  When??  He'll outgrow this, right? Oh, is that all still going on?

The thing is, EGIDs are still "new" disorders.  They began to be diagnosed (sparingly) in the 1980's.  The incidence has increased rapidly since then, but it's still relatively rare and the long-term data just isn't there.  Further complicating things is the fact that what little research that is being done, is being done on Eosinophilic Esophagitis.  Not that this is a bad thing - it's the most common of the very rare EGIDs - but it's only part of the puzzle for Aidan, since his colon is affected as well (and is actually generally in worse shape than his esophagus.).

There have been several studies done to try to analyze the limited data that is available, and what seems clear from my "research" (Googling is research.  Shut up.) is that few patients have shown complete resolution of the disease.  Most patients show that the disease persists, but that some triggers may be outgrown.

The important piece to note is that there are no studies showing that EGIDs limit life expectancy.  Furthermore, although this is a frequent worry of many EGID parents, no good link exists between EGIDs and cancer of the esophagus.

There are some complications of EoE that we are aware of and will look out for.  EoE patients can develop strictures (narrowing of the esophagus), making swallowing difficult and often leading to food impaction.  There's not much information out there about complications of EC, but Aidan has a fantastic team of doctors working tirelessly to keep him well.


Soooo, to answer your questions:  Yes, he will get better.  If I told you when, I'd be making it up.  No, he probably won't outgrow this.  And yes, I'm sorry to say, this is still going on. 


What does all of this mean to us?

We anticipate that Aidan will develop a list of safe foods, and that it will grow over time after we get some successful food trials under our belt.  Food trials are a long, slow process, so please don't be shocked when you ask and we tell you that he's still not eating.

We are confident that Aidan will figure out what's going to be normal for him, and he'll lead a long, happy, non-food-centered life.

Don't you worry about me...  I'm going to be just fine :)

Calling All Caregivers - Food Allergy Babysitter and Drop-Off Child Care Form

A fantastic organization called Kids with Food Allergies (KFA) has provided a guide to review key food allergy management principles and to inform other caretakers about your child's specific food allergies. It's a really handy reference for playdates, birthday parties, and other drop-off situations.

Download the guide here in full color.

This will definitely be posted in our kitchen for friends, family, and sitters to see.  I hope to convince daycare to post this in Aidan's classroom, too.  I love enormous visual reminders that Allergy Kids need some special care.

One Week In - Steroid Treatment

Last week, I told you about our latest trip to CHOP GI.  We left that appointment with a plan to start Aidan on a steroid, monitor him weekly for progress, and plan our next scope.  The scope is scheduled for April 4th, Aidan's "I put you through surgery and must now re-buy your love" gift has been ordered, and we've been dosing him with Prednisolone for a week now.  The thought was that he'd eat more, grow better, and life would be dandy.

What we hoped we'd get:

What we actually got:

With a side of:

Yeah - we're not exactly huge steroid fans around here.  He's angry.  He's sad.  He's hungry.  But he's still not eating.


A call to the GI gives us a new plan:

- Wean Aidan down from steroid (2ml per day this week)
- Call for status check on Monday morning
- Scope on 4/4
- Back to GI to review results and discuss next steps on 4/16


Reminder to self: everything we try that doesn't help gets us one step closing to finding the thing that does...

Think Positive, Mama :)

Story of a Food Trial

What's a food trial?  How does it work?  Who decides what he gets to have?


Ah, food trials.  We've attempted to trial a few things now, and it hasn't worked out yet.  So I can only tell you about food trials right up to the point where we fail them.  I hear tales of success - and I look forward to our first Pass.

So, what's a food trial?  It's more or less what it sounds like, trying out a food to see if it works out.  In our case, Aidan had been without food for nearly four months before his first trial.  It was the first non-formula, non-medicine substance he'd eaten in a long, long time.  We were **so** excited for him!

How does it work?  Again, I can only speak to how it works for us - but Aidan's doctors recommend introducing one new food at a time, feeding it every day for about three months, and having a scope & biopsy at the end to check for internal reactions.  If at any point we notice signs of a reaction, we get in touch with the doctors immediately and decide what to do.

Who gets to choose?  For us, it was a combination of what we wanted and what he needed.  A Nutritionist at CHOP helps us make decisions like this.  We chose rice because it's versatile, quick and easy to make, and he know he likes it.

 I like it!

So how did it go!?!

Well, to make a long story short, the trial failed.

To make a short story long again, we introduced rice in the form of puffed rice cereal on a Wednesday.  At first, he stared at it, totally confused.  It took a good solid half hour before I could coax him into putting a puff in his mouth.  Once he did, he was so excited.  He gobbled them up and begged for more.  I was excited for him - it seemed to be going well.

 Nom.

His teachers were excited for him, and since we hadn't gotten any bad reports, we assumed it was going well.  I rarely see Aidan in the evenings because of my work schedule - so I didn't really notice anything was wrong.

On Saturday, 4 days into the trial, I took Aidan play at Gymboree.  He was a beast.  He screamed.  He cried.  He grunted.  He arched.  He refused to stand or walk, preferring to drag his belly on the floor.  He had horrific diarrhea and his ever-present eczema patches got redder and scalier.  This wasn't looking good.  I explained it all away as only a mother can...  Teething?

Sunday found us shopping with Megan.  More screaming.  More grunting.  I think I recall Megan shouting over his death-squeal that this reminded her of pre-diagnosis Aidan.  I think my response was "Nah, c'mon, let's go buy more rice!" (And we did.  Aren't I the optimist?)

Monday found me facing facts on the phone with Aidan's doctor.  It was considered a fail.  We were miserable, he was miserable, and the rice had to go.  It was actually pretty sad, especially for him, because he truly enjoys eating and has no ability to connect the eating and the pain yet.

In the following weeks, we tried and failed with Chocolate Neocate, Vanilla Neocate, Vanilla Elecare, Tropical Neocate, Neocate Nutra "pudding", and E028 Splash.  Those were some tough, tough weeks.  We're in no rush to try any of it again anytime soon.

So what if my cheeks are scaly??  I've got pudding!

It takes at least a few weeks to clear Aidan's body of an offending food.  The behavior goes back to normal first, then his GI system, and finally his skin.  Those little red cheeks are always a telltale sign that he's eaten something he shouldn't have...

These cheeks, mommy?

Yes, son, those cheeks.

And these???

  

Those too.

I am hopeful that our next trial is a success, but I'm confident that no matter what the outcome, every step we take is a step closer to knowing how to help him.

Welcome to Holland

The following was posted in my other blog, back when I pretended I had things other than Aidan to write about.  It deserves a place here.

It is so, so hard sometimes to stay positive and love the life you're living instead of mourning the one you'd hoped for.  I hope that I can take a lesson from Aidan, who knows nothing but Holland, but DOES notice the tulips and windmills and Rembrandts.  It's not Italy.  But it's wonderful.  And it's ours.

-------------------------------------------------

I read this story several months ago.  Long before I knew that things with Aidan were anything other than they should be.  I distinctly remember reading it and thinking that it was touching, and how awful it must be to have something like this apply to your life.

As it turns out, we would learn.

This was written to help others understand what it's like to raise a special needs child.  Although my son isn't physically or mentally disabled, we are all too familiar with "special needs."  I call them "different needs," but it's all the same.  We find ourselves mourning the loss of our "Italian vacation", especially as we meet more and more Italy-goers.  But you know what?  Holland's pretty great too.  Holland is where we are, and we're learning the language and the customs as we go.  Sometimes we feel like we haven't brought the right clothes, and we don't understand the food, and dear god what's with those wooden shoes? - but Holland is where our little love is, and I wouldn't have him any other way.

 

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.

 Not Holland

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.

See?  Pretty!

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."

 Not even a whole building.  Overrated.

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.

A Visit to CHOP - GI

Having a sick child is like finding yourself suddenly swimming alone in the middle of the ocean.  You're not sure how you got here, you have no idea which way is "out", and you have a vague sense that this wasn't what you meant to sign up for when buying that bikini last Spring.  From time to time, you come to a buoy, and you cling desperately to it, because it's what's keeping you from totally slipping underwater.  You can't ever stay at the buoy - you have to keep swimming - but the last buoy you saw and the next one you hope to see are always at the forefront of your mind.

Today, we reached one of our occasional buoys.  A follow up appointment.  Our buoys tend to be about a month apart, and they rotate between GI, Allergy, and Nutrition.  Today, it was GI.

Knowing it would take a while (doesn't it always), I took a vacation day from work.  Aidan woke up early and played happily while I packed and repacked bags (Do I think we'll be held hostage at CHOP?  I don't know.  I just know I can't be seen there without at least five bottles, a blankie, and as many toys as I can stuff in my bag.)

We arrived, as usual, nearly an hour early.  Better early than late, right?  It gives Aidan a chance to own that place.  He especially likes the activity bus.  When we arrive, Aidan wants no part of me.  He's way too old to cry in the waiting room or cling to mama. 

This child requires no comforting.

We meet lots of other kids in the waiting room, including a little girl seeing Dr. Liacouras for the first time.  That was us, not so long ago, and I have words of wisdom for this situation.  He's rude.  He's dismissive.  Be pushy.

Suddenly, it's our turn.  Aidan hears his name now, and responds by walking quickly back to the activity bus for one more spin of the wheel.  I love watching his personality sneak out like this.  He'll come when you call him... right after a little mini-act of defiance.

 

Moi?

The visit didn't start off too promising. 


Aidan weighed in at 18lb 5oz (a full 3oz heavier than Friday, which is unsurprising since he eats twice as much for us on weekends as he does for his teachers all week long.) and is nearly 28" tall.  Less than 1st Percentile for weight, less than 1st Percentile for height.


The doctor didn't remember us, nor did he attempt to pretend to.  He again told us that Aidan probably has some severe allergies and that we should try an elemental diet.  I tersely reminded him that we're on month six of foodless fun.  Then he said we should wait a couple of months to scope fully elemental.  Wrong again, L.  We did that almost 3 months ago.  So this brought us to Oh, well I'm glad you reminded me.  I believe Aidan has something called Eosinophilic Gastroenteritis.  If it were just his esophagus, we'd call it Eosinophilic Esophagitis.  If it were just his colon, we'd call it Eosinophilic Colitis.  But it's both.  Hence, Eosinophilic Gastroenteritis.  Bingo.  Back to where we were at our last visit.  At this point, my heart kind of sank.  We're not making any progress, are we?


But I'm staying positive today.  And things did pick up from there.  We left with a pretty solid plan.

What we know: Aidan is not eating enough to gain weight.
Possible Reasons: 1) His tummy hurts too much.    2) He doesn't feel like it.
What do we do? We act as though it's #1 until we can prove that it's not.  

- Today, we begin oral steroids.  Since Aidan had high numbers of eosinophils even when he was 100% elemental for 3+ months prior to his scope, we are fairly positive this is not just a food problem.  An oral steroid may calm his esophagus and colon further, which would make him comfortable enough to eat.
- We will try these steroids, with weekly checkpoints with the CHOP staff, until the time of his next scope.
- The next scope will take place in the next 3-4 weeks.
- We will know around the time of the scope whether or not the steroids are helping - if they are, we will have a happy, growing eater on our hands.  If not, we expect no changes (other than some 'roid rage!).

If the steroids don't work, we will schedule Aidan to have a feeding tube placed.  First, an NG tube.  Assuming it's well tolerated, about 4 weeks later we will place a G tube.  More on that later.

If the steroids DO work, things get a little trickier.  We can't just leave him on steroids forever.  We will be weaning him down from them and switching him over to immunosuppressant drugs.  In theory, that will calm the reaction in his gut and let him grow and gain some weight.  This scares me - how do I send an immunosuppressed 1 year old to daycare?  But that's a worry for later.

For now - we try what we have and hope he doesn't morph into The Hulk.

Organizations That Matter - Tubie Friends™

From time to time, I stumble upon an organization that I think is really worthwhile.  I'd like to share one today, because I think it's both touching and important.

Tubie Friends™ was started by a group of moms whose children have been or are currently using a feeding tube as a primary source of nutrition. We’ve seen what a comfort a Tubie Friend™ can be during a hospital stay, procedure or just when they need a friend. In addition to bringing comfort to the child, these Tubie Friends™ can also be used as a teaching tool for family, friends and caregivers. Our goal is to take the fear out of feeding tubes, one Tubie Friend™ at a time.

I took that description from their Facebook page, because I think it's such a good one.  These people take time and resources out of their own busy lives and send joy to children, one Friend at a time.  It's such a good way to promote feeding tube awareness, and it's an even better way to start conversations among children that promote understanding and acceptance.  What an amazing visual aid to take in to show and tell.  What a comfort to a frightened child facing their first tube placement surgery.

Go check out their website!

I have reached out to this organization to let them know how strongly I feel about the good that they're doing and to see how I can help.  We sent a donation in the form of a Build-a-Bear giftcard that allowed ten other children to receive Tubie Friends™ of their own.  I am heartened to see someone spending time on a child's day-to-day quality of life.  Our children are more than their diseases and disorders.  They're scared, they're curious, and they want to fit in with everyone else.

You can bet that if we go the tube route, we'll be relying on the kindness and generosity of the Tubie Friends™ organization to bring Aidan some joy.