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.

Jinx

I came home yesterday to the kids playing "throw up".  Each of them had their own infirm stuffed toy and a bowl.  They took turns making wretching noises while Baby Iris, Broby, and Elmo hung their weary heads over their bowls and presumably hurled.  Then, Looly, Bean, and Roo dutifully carried the imaginary contents to the toilet where they dumped it and rinsed out their bowls in the sink.  This kept them enraptured for half an hour at least. 

So it only made sense that after all of my rejoicing on the dairy trial results, Roo threw up his real dinner last night.  He ate well and even fed himslef about half his plate - turkey meatballs, elbow macaroni pasta (egg-free of course) in butter and ground flaxseeds, and buttered corn (Looly's choice of vegetable last night). 

To celebrate I gave the kids chocolate chips for dessert.  They've had the same dairy-free chocolate chips lots of times but typically I buy the mini-chips.  This time the grocery store was out of mini's so I picked up a bag of regular sized chocolate chips - still dairy-free mind you.  Wrong decision.  Roo gagged on a chip, spit it out, followed by the entire contents of his stomach. 

I'm positive it had nothing to do with dairy and was just another inevitable event in the world of reflux and oral delays but still.  The sad truth is when it happens my mind is not really on my poor suffering, vomiting child.  Instead I'm silently calculating the caloric value of each heave as it exits his body.  Last night, 300 calories at least.  Ugh.

Oh yeah.  The cat threw up yesterday too.  Special thanks to Vivi for cleaning up that one.

Record Week

After much anxious breath holding and hand wringing, I am officially ready to declare Roo's dairy trial....a SUCCESS!!  He's been eating dairy laden foods for a few weeks now and appears to be suffering absolutely no ill effects.  Pizza, ice cream, cream cheese on toast, real yogurt, cream sauce, cereal with milk, and anything with "natural flavoring" have been making regular appearances on his plate.  I am ecstatic.  I'd consider buying a cow to tie up in the backyard but our town probably has an ordinance against that. 

Roo's horizons have been broadened exponentially and whether he realizes it or not, he's eating a little more.  Granted eating more includes handfuls of goldfish crackers, cheese puffs, and these strange sugar yogurt crisp things - the cumulative nutritional value of which I am sure sums zero, but still, he's chewing food and swallowing it.  Victory is sweet. 

In fact, I hesitate to write it for it seems every time I do we begin to regress once more, but our baby scale has been creeping up.  Roo had three new weight records this week!  The ultimate was a reading of 20 pounds, 12.5 ounces last night.  Yes he chugged some water, ate a good dinner, and then drank a couple ounces of milk, but you know my theory.  We're all about extremes.  I don't care how he got there.  He got there.  A few more ounces and we'll be staring 21 pounds down the barrel. 

And no, I still haven't called the doctor to figure out our next steps but I think I'll wallow in the glow of this moment for just a little longer before I do.

Molluscum Contagiosum

Besides the crusty, red eczema that plagues his legs and arms, Roo has this nasty patch of hard little bumps around his ankle.  Typically it doesn't seem to bother him but it is unsightly - imagine a patch of twenty or so little warts, mostly flesh toned but every so often with a red oozer or two.  We saw the pediatrician a few weeks ago and she took a look.  Add another ailment to Roo's cirriculum vitae: Molluscum Contagiosum.

Molluscum are not warts exactly.  They are caused by a virus and are apparently, quite common in children.  They are harmless, or so I've been told, and the general consensus is to let the Molluscum run its course and the papules should go away on their own.  Sometime in the next few years, that is. 

In case you missed the implications of the name, Molluscum Contagiosum are well, contagious.  If you have them, you're not supposed to share towels or baths to avoid infecting others.  Of course, I found that out after we discovered a few papules on Looly's legs, and one on Bean's chest. 

We go to a gym class one day a week where the kids go barefoot.  Roo was in shorts last week and while no one was brave enough to broach the topic outright, I did catch a horror-stricken mother staring at his ankle.  I smiled and she gathered up her well-nourished, satin-skinned toddler and carried him to the uneven parallel bars at the opposite end of the gym.  Wonder if they'll be back next week? 

Ok, I'm being insensitive but it does beg the question, what am I supposed to do for the next several months (years??) until these things go away?  As a 20 pound 2-year-old boy who can't eat birthday cake, he's enough of a pariah as it is.  I can't keep him cloistered away forever.  On the other hand, I don't blame other parents for getting freaked out for not wanting their kids to contract ugly warts. I don't want to deal with them either.  We have been assured that the risk of infection is minimal.  But since our other two kids have them too, how minimal can this infection risk be?  Aside from lancing them off or burning them (neither of which is recommended for children his age) I'm not sure what our options are.  Has anyone else dealt with these?  Do I need to keep him covered and in seclusion?  How about the community swimming pool?  And I was looking forward to summer!

Dairy Trial

Last week's appointment with the "Feeding Team" was disappointing due to a critical miscommunication between the new GI doctor/food aversion/feeding specialist and me.  When we went through the basic "what's he eating?" drill, it appears as though he somehow missed the crucial part where I said that Roo drinks soy baby formula that has been fortified to 30 calories per ounce.  I swear he must not have heard that part because his advice was as follows:

• Reintroduce dairy on a trial basis (woo hoo!!)
• Change his formula to Bright Beginnings soy formula because it has 50% more calories
• Buy the book "Food Chaining" (written by said doctor, I might add)
• Bulk Roo up a few pounds and return to meet the rest of the feeding team in July once he's not so "undernourished" 

Wha????  So, I'm trying to keep my PG rating but seriously?  Bulk him up?  Isn't that why we're here?  If I could get the kid to eat, we wouldn't need the feeding specialist. 

I walked out of the appointment truly believing that Bright Beginnings must be some sort of super-fortified miracle formula with 50 calories per ounce that we had overlooked.  Of course, Bright Beginnings is a more expensive version of what we're already giving him - fortified soy formula.  It's 30 calories per ounce with roughly the same nutritional values in all areas.  Sweet. 

Call me crazy but I'm not switching his formula.  The Bright Beginnings is sweet and vanilla flavored - two things Roo loathes, and offers no benefit other than putting the poor kid through yet another formula overhaul. 

I'm allowing myself a cooldown period and then I'll broach the subject with the doctor.  Or maybe I won't.  I haven't decided yet.  In the interim I'm considering asking our pediatrician for a trial Zantac prescription because he is definitely refluxy and can't eat at all in the morning.  Today's breakfast - one bite of plain yogurt, one eighth of a strawberry and a sip of milk.  I'm full just thinking about it.

Okay, feeling a little better now.  Onto the good news.  We got the go ahead to do a dairy trial and so far it's going as smooth as Chantilly cream.  He's had real butter, cheddar cheese, a few bites of real yogurt, cheddar goldfish crackers, cheese pizza, chocolate pudding, and macaroni and cheese.  No Chantilly cream yet, but he's no worse for the wear with the new additions.  I am so happy for him.  And for us.  We have been liberated.

He doesn't love everything.  Yogurt, pudding, and other squishy stuff he's happiest smearing on the cat, but the other night be ate a whole square of pizza.  Looly and Bean cheered and shouted for him the whole time and he actually enjoyed it, I think.  I don't know if it was the cheering section or the pizza he liked more but either way, he ate a whole piece.  That's a veritable feast for him. 

The girls are so sweet and have been adjusting to Roo's new loosened food restrictions.  Several times Looly has reminded me that Roo can't have goldfish (or real cheese, or butter, etc.)  When I remind her we're doing a dairy trial she gets all smily and hugs her brother and congratulates him on his new options.  Honestly she is more of a help in this process than several doctors have been.  Bean too.  Our conversations go like this:

Bean: "No Roo eat pizza."

Me: "He's trying it tonight Maisie.  We'll see if it gives him a tummy ache."

Bean: "No tummy ache, Roo. Eat more pizza, Roo."

My sentiments precisely.

Just the Flax

About a year ago, Looly started getting scaly red patches in the creases of her elbows, on her legs, and behind her knees.  They were round and itchy with well-defined borders.  We took her to the pediatrician who diagnosed eczema.  It was a welcome relief as I'd been suspecting ringworm or a flesh-eating virus.  Her spots flare from time to time - usually worse in cold, dry winter, but we seem to be able to control them fairly well with frequent applications of Aquaphor and Vaseline. 

Roo, as usual, is another story.  As an infant, his perfect milky baby skin was tainted by crusty pink patches in the creases of his elbows.   Over his first winter, his legs were much dryer and scabbier than Bean's no matter how much we moisturized.  His skin improved that summer but the beast came back with a vengeance in the fall and hasn't left since.  Today, he has perpetual red flaky patches of skin all over his legs, as well as full blown crackly, bloody welts that plague the creases behind his knees.  His stomach and back are covered in a bumpy, spotty, rash that looks a lot like prickly heat but stays whether he's dry or wet, hot or cold.  He's constantly pulling at his shirts and pants, trying to get a good scratch.  We try to keep him covered because when he does get a hand in, he typically breaks the skin with his zealous scratching.  Not pretty.  We slather him in Vaseline a few times a day and use a steroid creme to manage the worst of it.  Rest assured no one wants Roo's hand-me-down clothing.  Most of the time he looks like a miniature auto mechanic. 

To date Bean is clear but I don't think we're out of the woods since Looly's first symptoms didn't appear until she was closer to three.  Time will tell. 

Then this winter, I discovered a couple of patchy spots on my hip and recalled a conversation I had with a massage therapist two years earlier when I was pregnant with the twins.  She noiced them and thought it looked like eczema.  I told her I don't have eczema and chalked it up to yet another malady of pregnancy.  Hmmm...

A few days ago I ran into the mother of a fellow allergy- and eczema-sufferer, at Whole Foods (where else?).  She suggested that flaxseed has been instrumental in clearing up her now 6-year-old son's eczema.  So what the hay, we're giving it a whirl.  I'm throwing ground flaxseed into pasta, yogurt, sauces, cereal, smoothies, veggies, and so far, surprisingly, no complaints.  I'm dousing cooked meat and veggies in flaxseed oil and even stirred some into ketchup.  Keep in mind you can't cook with flaxseed oil because it has an extremely low smoke point, but you can add it once food is cooked or reheated.  My kids are so used to getting everything drenched in oil or margarine, they haven't complained about this either. 

As usual, I am wary of the miracle cure for anything allergy-related but figure it can't hurt.  We'll see how it goes and I'll report back in a few weeks.  I realize now that I should have taken pictures for a before and after comparison.  Perhaps I'll do that tonight for some concrete evidence.  In the mean time, if anyone else has any flaxseed success (or horror) stories to share, I'd love to hear them!

Spring Break

Our superstar Au Pair, Wiebke, was on vacation last week, which just happened to coincide with Looly's spring break.  In the spirit of full disclosure, the prospect of five solid days home alone with my under-four brood was not exceptionally appealing.  Judge me if you will, but really, one of the best things that's ever happened to us is the Au Pair program.  Wiebke, and her predecessor, Debbie, have undoubtedly saved us countless hours and dollars in family therapy, visits from social services, and booze.  You think I'm kidding.  Sadly, come July, we will say goodbye to Vivi, as the kids have affectionately dubbed Wiebke, and move forward as a family of five, not a happy six, as we are now.  I don't like to think about it but in essence this was a preview of the rest of our lives and the thought had me terrified. 

Somewhat surprisingly we all came out of the week mentally and physically intact despite four prolifically runny noses,  three hacking coughs, and little sleep.  In our house, and many others I'm sure, sick kids mean no sleep.  In our house, it also tends to mean lots of vomit.  Fortunately, the sleep and vomit did not overlap this time around, so that was a bonus.  I hate changing sheets and kids in the middle of the night.  No matter what, it's just twenty times worse cleaning up a sobbing, stinky child in the dark in your pjs.  Minor setbacks become the apocalypse after 2 am.

As for the success of the week, Mother Nature gets credit on this one.  What a freakin' incredible weather week!  If global warming means eighty degree temperatures in Chicago in late March, I am all in.  My air conditioners will run year round.  I will drive to the corner store in my enormous gas-guzzling minivan for plastic single-serving water bottles.  I will rack up frequent flyer miles left and right.  I'm converting the recycling bin to an ash tray.  Okay, perhaps not, but I have been tempted.  How much can a few measly degrees hurt?  (Please no comments from those of you residing in low-lying coastal communities.)

Regardless of the reason, we took full advantage and played summertime.  Shorts, t-shirts, and sandals all around.  Playground, walks to the park, picnic lunches, popsicles, open windows, stories on a beach towel in the backyard.  The water table was out in full force.  It was awesome and we all had a blast.  Yeah, even me. 

Lessons learned from the week: My kids can get along for more than five minutes.   Fingerpaint comes out of silk/rayon blends splendidly.  Vaseline does not.  Drinking standing rain water from the top of a paint can won't kill you.  Shouting out the colors of cars as they zoom past is a great way to distract a couple of grumpy toddlers.  I don't mind playing restaurant for the fiftieth time in a day as long as it's under sunny skies and light easterly breezes.  Obviously, the main takeaway from this experience is that as long as we live in perpetual summer from here on out, everything will be just fine.