My latest beef...

Roo's latest EoE scope results are in and it appears that "good" news we've been hoping for will have to wait for another week.  The eosinophils are still in full force.  Actually, they've reduced ever so subtly in the mid-esophagus but are thick as ever in the distal esophagus.  So, essentially we took dairy out of his diet (again) for seven weeks, sedated the kids, stuck a camera down his throat and now we know....absolutely nothing more than we did seven weeks ago.

Maybe milk isn't the culprit after all?  Or it's not the only one?  Maybe there's a new allergy?  Or allergies?  We have no idea.  We're no closer to an answer but it does help explain why Roo continues to vomit regularly.  There's still the lingering possibility of beef, but everyone I mention it to starts talking to me like I'm pushing a shopping cart down the highway wearing a bird carcass on my head. 

I am getting a thorough education in the ways my own body manifests stress...pimples, inexplicable exhaustion, my own GI trouble of which I'll save the gory details, living in gym clothes without venturing anywhere near the gym, constant overwhelming urge to drink milkshakes, and infrequent showering have all become par for the course because when you look good, you feel good.  

The polyp biopsies have been sent to a different lab for pathology.  We wont have them until Monday.  Until then all I really want to do is drink wine, eat chocolate, and sob quietly whenever the mood strikes.  Should be another stellar weekend.

Vomitathon

For a while there I thought we might be trending toward less retching and spewing.  Four times this week!  One crying induced choke when the babysitter showed up, one regular old-fashioned gag on the very last bite of an hour long dinner session, one middle of the night milk disaster, and one inexplicable couch vomit that even he had no idea was coming.

What gives?  He's off milk.  Off eggs.  Off nuts.  Off any bites larger than a dime.  He's working on his chewing and maybe even starting the get the idea, if not the hang of it quite yet.  He doesn't seem to be in pain.  He's happy - often immediately before he pukes and almost always immediately after.  There's the runny nose factor, which always makes his feeding and throwing up worse, but if that's going to be the deciding factor, there's no recourse but to move.  Runny noses are a way of life here until mid-April at least. 

The thing is, I don't even care about the mess anymore.  It's rather like changing a diaper - though I wouldn't mind giving up that gift of motherhood soon either, and despite the thousands of changes I've performed, I would still opt against doing it on the table of a crowded restaurant.  It's all the work that goes into it.  After an hour of helping to spoon tiny nibbles of hearty gnocchi in oil-rich marinara and fluffy egg-free, dairy-free meatballs into his mouth, he gives it all back on the last bite.  Last night, he put away nearly half a chicken breast, couscous, and a few green beans.  Happily, he fled the table, played with his beloved Silly Bandz for ten minutes, then puked all over the couch.  He explained that his tummy never even hurt.  He didn't know he was going to throw up. It surprised him as much as the rest of us.  At least it was bath night.

Maybe the EoE's still bothering him.  The next scope's set for November 5.  In the interim, there's the allergist appointment, flu shot sequence, and pre-op physical preceding the scope.  It's a laugh a minute for this kid.

Off the Sauce

The verdict is in and while it wasn't what we wanted to hear, at least we can begin healing up Roo's welted, pus-ridden esophagus now.  I still have no idea how or why we didn't notice any change in eating habits, behavior, etc. with the reintroduction of milk last spring, but I do know that all those cheddar goldfish crackers and ice cream cones this summer were not as innocuous and they seemed.  Aside from the white plaques and pus, his eosinophil count was back up to 20-30 hpf (per high power field in the microscope).  Normal is zero.  Chronic GERD sufferers can have up to about 5.  Our hospital makes the EE diagnosis with 20 hpf, some places diagnose anyone above 15 hpf.  So, it could be worse since his initial count was 70-80 hpf a year ago, but needless to say we've eliminated dairy once again.

Believe it or not I'm still waiting to hear what our official course of action is from the doctor's office.  We've been instructed to take away all the milk, whey, casein, etc. and we've made the switch back to soy infant formula with much less kicking and screaming than I anticipated.  I'm guessing we'll need to rescope in 8-10 weeks to see if he's clean but don't know for sure.

We're heading back to speech therapy for a new evaluation on Friday.  I can hardly wait.  I am so looking forward to a day when every meal takes less than an hour to consume.  He tries but he's just so painfully slow, and then of course, there's the constant threat of the gag.  He threw up Saturday night moments before the babysitter arrived, and gagged on a chick pea at breakfast this morning.  I don't know what I was thinking with the chick pea.  Just got a little ahead of myself, I guess.  Depending on how the new evaluation goes, we might need to start looking into some early intervention programs for the oral delay.  Hmmm...why do I feel like I've been here before?

White Plaques and Furrowing

Roo had his third upper endoscopy yesterday.  As usual, he was a total trooper.  I ripped him out of bed at 5:15 am, slapped a clean diaper on him, and pushed him out the door in his PJ's before he'd have the chance to ask for a drink, which of course, he couldn't have.  The procedure went well overall.  He was a little hesitant to go along with the nurses at first but the "little something to relax him" that the anesthesiologist gave him did the trick almost immediately.  He was all grins and giggles, watching the trails from his fingers, and driving his hospital bed back to surgery complete with "beep- beeps". 

Now, I don't condone substance abuse at any age but man how I wish I had a little bit of that happy juice in the fridge to administer to the kids from time to time.  Looly's hysterical because she scraped her elbow?  Happy juice.  Bean's on another biting spree?  Happy juice.  Roo's chucking Legos at the cat and crying when the poor thing seeks shelter in the basement?  Happy juice.  Accidental shopping spree?  A little happy juice for Mufasa's water bottle while handing over the receipts.  Okay, I guess I'm starting to see why they don't dole out gallon jugs to the parents...

Anyway, we won't have the official results for another day or two but I am ceding victory to the know-it-all GI doctor.  I honestly still can't believe it but the results of the scope were not good.  For the first time ever there was visible evidence of allergy cells (eosinophils) in Roo's esophagus.  Essentially, the doctor could see, and provided me with photos, of the inside of his esophagus complete with nasty little white plaques (pussy groups of allergy cells) and mild furrowing (kind of like little ridges) - two of the tell-tale signs of EoE.  The worst part is that in his previous scopes he never had any visible evidence of EoE.  The biopsies revealed EoE, but his esophagus looked healthy.  Seems like it's gotten significantly worse this year. 

I am beyond bummed.  I so thought he was tolerating the milk.  I'm so sorry that he has to be experiencing pain whenever he eats or swallows for that matter.  And selfishly I'm dreading the return to a dairy-free existence.  I'll save the true lament for once the biopsy results are in but it's not looking good folks.  In fact it looks worse than before.  Maybe I could sneak just a tiny bit of that happy juice for me?  Feel like I could use it.

Eosinophil Awareness

Pull out your party hats, it's National Eosinophil Awareness Week!  I haven't written much specifically about eosinophilic disorders lately because Roo's been doing so well.  His last endoscopy in November 2009 was clean, meaning he had no eosinophils (white blood cells) hanging out in his esophagus wreaking havoc on his digestive tract.  

Like so many of these crazy allergic diseases, Eosinophilic Esophagitis was pretty much unheard of until the 1970's.  Since that time, there's been a rapid increase in cases and no one knows exactly why.  The disease is more common in boys than girls, by the way, and while cases appear all over the world across all nationalities, it seems to have a particular affinity for Caucasians.   

We are the lucky ones because we've been able to manage Roo's symptoms through simple diet modification.  Many children are not so fortunate and experience chronic chest and stomach pain, failure to thrive, vomiting, dysphagia (that's when food gets stuck in the esophagus and needs to be surgically removed or regurgitated - one of Roo's big symptoms) from staggeringly long lists of foods and environmental allergens that no one else seems to think twice about.  Can you imagine?  And that's not even taking into account the emotional and social impact these kids suffer.  For many the only "safe" nourishment is specialized amino acid formulas delivered through feeding tubes. 

So, in an attempt to spread the word and garner support for finding a solution to this crappy condition, please visit the American Partnership for Eosinophilic Disorders.  This organization is not flashy but it's incredibly informative, well-organized, accessible, supportive and serves as a fantastic resource for our family and thousands of others dealing with eosinophilic disorders.

GI Update

Thanks for all the well wishes for Roo's Friday GI appointment!  Overall things went as expected with a few surprises. 

As far as the GI doc is concerned, Roo's growth is following a curve.  He's not following "The" growth chart, but he is growing.  He weighed 20 pounds 15 ounces and that put him on a tiny slanting upward arc from where he was three months ago at 19 pounds 10 ounces.  Forgive me for not mentioning to the doctor that the previous weight was taken while he was naked and this one while fully clothed and diapered.  I was all too absorbed by the fact that his height has increased to 32.5 inches which is, drumroll please......officially on "The" chart.  In fact, it's 10th percentile for his age on the chart.  That's non-adjusted for prematurity, regular old 24-month old American boy height.  Yup yup.  Take that size 12-month pants!  We're moving up to 18-months...as long as we can find adjustable waistbands. 

The general consensus is that the eosinophilic esophagitis is not causing his vomiting anymore.  Unless we alter his diet drastically, which we have not, the EoE is not likely to be causing many problems at the moment.  There is no clear single cause for his eating issues and food aversion but rather a combination of EoE, regular food allergies, oral delay, reflux, and his learned avoidance behaviors. 

The recommendation is to see a feeding team.  We have a referral for a different GI doctor who specializes in food aversion.  He works as a team with a gaggle of other specialists - speech therapist, occupational therapist, nutritionist, psychologist, etc.  While Roo has seen all of these therapist types before, the beauty here is that they are all part of an integrated team.  We'll see how it goes. 

Roo will return to his old GI team for an EoE check-up and allergy testing in about six months.  Until then it's status quo for his diet - no eggs, nuts, milk, or beef, and full steam ahead trying to get him to eat, enjoy eating, keep food down, gain weight, and grow.  No problem I'm sure. 

The final surprise of the appointment was that our current GI doctor is leaving Children's Memorial.  I'm not thrilled since he's been good to us, and the fact that he is young, Indian, and has little twins of his own didn't hurt his reputation in our house.  In retrospect, however, I'm not so sure how I feel about him performing Roo's last surgery a couple of weeks after bringing his own newborns home.  Anyway, he's heading out of state to a clinic that currently has no EoE specialist.

6 Week Challenge

Roo had a weight check this morning at his pediatrician's office. While his doctor might have been slightly less than enthused at his gaining 5 ounces in the past 2 months, I was ecstatic. The little guys tipped the scales at a whopping 19 pounds, 15 ounces...so dangerously close to 20 pounds I let out a whoop and raised my hand to high-five the nurse right before she furrowed her brow to let me know this was not what we were hoping to see.

Fortunately I wasn't the only one who embarrassed myself. Bean wailed hysterically throughout the entire appointment despite the fact that she didn't even need to get undressed.

Roo was a great sport but as soon as we were out of there he proceeded to fill his diaper with what surely constituted more than a few ounces. I didn't care. It was in him at one point and my boy might hit 20 pounds before he turns two. Rock on, Roo. Rock on.

His next appointment is with the GI specialist on March 12. The official plan is to continue to keep him off all the dairy, eggs, nuts, and beef, and to work on his food aversion as we've been doing for the past couple of weeks. We're all anxious to see this magical catch-up growth everyone keeps talking about. We have six weeks to bulk him up and really wow his EoE team at Children's Memorial. I'm game. I hope he is too.

Despite all the good news we did have one minor setback this week. We have these fancy European Stokke highchairs because they were the only type we could fit three of at our kitchen table back when all of the kids needed them. Anyway, they feature a removable plastic rail for babies and we've been a bit lazy about removing them. Lately both the twins have taken to climbing into their chairs on their own using the plastic rail to hoist themselves up. It's a precarious maneuver for sure but the physical challenge seemed to make them happy to come to the table so we let it slide. Yesterday, Roo had an accident. While climbing into Bean's chair he got one foot stuck in the straps, lost his grip, and you can imagine the rest. Major tear-fest that ended with the regurgitated contents of his stomach on our kitchen floor. So, off come the rails. My babies are growing up, even if they're not exactly "growing".

And this weekend...big kids beds. Wish us luck.

Poor Eaters

Book review time.

A few weeks ago I searched for books on the topic of food aversion and didn't find much. After reading a couple of enthusiastic reviews I doled out the 20 bucks for a stuffy looking paperback called Poor Eaters by Joel Macht, Ph.D. My expectations were checked by the amateurish geometric cover design and the fact that it was published almost a decade ago, when EoE cases were far and few between. If our pediatrician, pediatric GI specialist, nutritionist, and speech therapist couldn't give us the magic formula to get Roo to eat, how could this old book possibly help? Well Mr. Macht, please accept my sincerest apologies! Poor Eaters might just save us from the g-tube yet.

To be honest, I hesitate to write this entry for fear that the progress we've made in the past couple of weeks will suddenly shatter if I dare call it that - progress. Still, we've seen changes in Roo in the past 10 days that are more encouraging than anything we've accomplished in the past 10 months. He's eating. Not always enthusiastically, but he's eating. In fact, I think he's even bulked up (gasp!) a few ounces. 

I should mention that the book emphasizes eliminating any physiological issues related to eating before attempting any of Mr. Macht's techniques. For us this is an ongoing struggle. We think we've identified the allergens that affect Roo's esophagus and have eliminated them. He's off all nuts, dairy, eggs, and beef. A clean scope (upper endoscopy) at the end of November, indicated that our dietary changes were working but we are still careful when introducing any new food. And he still surprises us with a projectile vomit now and then so we just don't know for sure.

As is turns out, there's no magic formula. We were already doing many of the suggestions in the book - using contingencies, finding the success points on which to build, ending meals on a positive note, etc. Somehow tweaking our methods, having a clear, measurable path for progress, and being able to relax in knowing that other children have come through this has made all the difference. So thank you, Mr. Macht. Thank you.

Beyond Picky

I have been reading a lot lately about picky eaters. I've heard many stories from other parents about their problem eater kids who refuse entire food groups, those who dissolve in a puddle of tears at the sight of vegetables (any vegetable!) and even one who subsisted for an entire year on grilled cheese sandwiches, blueberry yogurt and starfruit. "I swear," his mother assured me "it gets better." Well I certainly hope so. The thought of my son entering the junior high boys locker room at his current 19 pounds and 30 inches is a bit worrisome.

After all this reading, the stories, the sharing...I sympathize, I do. No one feels good that their child won't embrace veggies. Nobody wants to fight over the shred of cheese that inadvertently contaminated the plate of otherwise perfectly acceptable pasta and marinara sauce. Let me assure you, however, that Roo's eating issues go way beyond picky. One blueberry, sans skin, does not a breakfast make. Unfortunately until about a week ago, that was a typical meal for Roo. And that one blueberry? It took effort to get it in him.

I imagine there are others out there dealing with severe food/eating issues with children of all ages. The failure to thrive kids. Those who cringe at the sight of a spoon. The g-tubes. In fact I KNOW that you are indeed out there. But beyond our medical team of a nutritionist, GI doctor, and speech therapist who all specialize in eosinophilic esophagitis, I have had a heck of a time finding resources and support for dealing with more generalized food aversion in young children. So here I am.

Feeding Frenzy

I used to love to cook but this whole thing is wearing on me.

My husband, Mufasa, is sneaking cold cheese curds at the kitchen counter and my 3-year-old daughter is in tears over a denied request for a peanut butter sandwich. The fact that it's almost dinner time has nothing to do with it. My 22-month-old son, Roo, has severe food allergies. No peanut butter for Roo. No cheese curds either.

After nine excruciating months of unexplained food aversion, weight loss, vomiting, and frantic night-waking, Roo was diagnosed with Eosinophilic Esophagitis (EoE). Simply put, EoE is an allergy that causes inflammation in the esophagus to the point that food can become lodged there. The worst part is that my baby suffered silently for months, always hungry, yet unable to eat due to the burning in his tiny throbbing chest. The good news is that now that we know, we're dealing with it.

Roo's EoE is food-based. He follows a strict elimination diet including no traces of dairy, eggs, nuts, or beef. Thankfully the diet seems to be working and we are thrilled that he hasn't needed more invasive measures such as tube-feeding. Still, the impact his diet has had on his appetite and our family in general is tremendous.

No more peanut butter sandwiches for my preschooler, no weekend breakfasts out at our favorite dive, no macaroni and cheese, no more “real” cheese at all. This last bit is particularly difficult for my husband who is pre-diabetic and until recently, considered cheese the mainstay of his diet.

As the daughter of a chef and a restaurateur, these concepts are completely foreign to me. I like to cook. I love to bake. I live to eat. My own childhood was spent napping under the candy counter at our family's pizza shop, baking peanut butter cookies with my mother, and sticking my fingers into all sorts of mysterious and no doubt egg-laden sauces.

Through both of my pregnancies I worried about all sorts of nightmarish scenarios, some completely rational, others not so much.  I lost sleep over the prospect of scalding bath water.  I had visions of inadvertently poking a sharp object through the soft spot on the top of my newborn's head. I feared my own borderline childhood obesity would manifest in my children. I suspected each smiling store clerk of being a knife-wielding maniac who cut babies out of pregnant abdomens.  You get the idea. Never once did I fear that I wouldn't be able to nourish my children. I had trained my whole life for this. I couldn't wait to nurse and eventually to make my own organic baby food.

I have cabinets bursting with cookbooks featuring luscious frittatas, creamy stews, and cakes iced slicker than seal skin. Food is my gig. I never dreamed that I would struggle to provide healthy, delicious, satiating meals to my entire family and the fact that often I cannot is crushing. I pour over allergy-free and diabetic-friendly cookbooks looking for that one allowable, nourishing, crowd-pleasing meal. Thanks to frequent substitutions and specialty grocery stores, I'm getting better and learning as I go. For now, however, I assure you I have the best fed garbage can on the block.