Monday, November 22, 2010

Peaches and apples and beef, oh my!

Still no word on the polyp but not for my lack of asking.  In fact due to my recent, frequent repetition, the word, polyp, has officially lost all meaning.  Polyp.  polyp.  polYp.   But I digress.  The real reason for this post has absolutely nothing to do with, ahem, polyps. 

Patch testing rocks.  Aside from the mild discomfort, the 3 separate hour-long trips back and forth to the allergist's office all during nap time of course, and the gray rectangular tape marks that refuse to dislodge from Roo's back, I love patch testing. 

Care to join me in my beef dance?  That's a big fat positive to beef, baby!  Take that doctors who think I've lost my mind.  My boy is allergic - and I mean red, puffy, welty-skinned ALLERGIC to beef!  So aside from getting to gloat a bit about how I was right, the positive beef patch test gives me reason to believe that there's a chance, however slim it might be, that his next scope might be clean.  Regardless of the scope, clearly beef is not helping the kid out, so it's nice to have that matter settled.

The not so exciting, yet equally interesting piece of the puzzle is that he also tested positive to apple and peach.  Who the heck is allergic to apples?  Aren't apples one of the first baby foods you introduce?  Right after homemade organic butternut squash and pear of course.  So, yup, in retrospect, he's been having symptoms I can relate to apple.  Like, the frequent vomiting after drinking apple juice.  How did I miss that one?  I guess that fact that he adores apples clouded my judgment.  Well now I know.  And peach?  I can't even remember him having peach but I'm sure I offered it more than a time or two.  Nix peach.

So, as much as I loathe the ever increasing list of foods to avoid (peanuts, tree nuts, egg, milk, beef, apple, peach) I'm happy that we might be making some progress.  I'm thrilled that we might have an explanation for why his symptoms never subsided - namely because we started giving him copious amounts of beef following his one clean scope.  And, dare I say it, I think he might not be allergic to milk.  Yes yes, I get it, I know, don't get your hopes up.  But still, the patch was negative for milk.  Could there be hope?  Because I've got to tell you, if his body's open to bargaining, I'd trade milk for beef/apple/peach in an instant.

Friday, November 19, 2010

Wacky pathology jokes

At this point the pediatric pathology department is clearly playing a cruel joke, the butt of which is undoubtedly me.  I was mad at first but I guess if anyone needs a good laugh, it's those guys.

I checked in with our CNP in GI again yesterday and while she still has not received word from The Pathologist regarding the polyp, she did thank me for my patience.

So, after the obvious, did they lose the biopsies(?!) my question is this: Am I to believe that hidden deep in the recesses of one of the world's best funded hospitals for children there resides exactly one pathologist?  The backlog truly must be enormous.  With resources so strapped, is he working by candlelight?  No wonder there isn't time to reply to email since the time change.  Dusk comes so early these days.  Has anyone considered the idea of hiring a nurse? an assistant? how about an intern to answer emails?  Heck, maybe it's time to throw caution to the wind and bring in another speech therapist while we're at it.

The anxiety of the past two weeks is waning only because my body can maintain that level of stress for this duration.  Basically, I don't have that kind of time. 

Fortunately I've been able to refocus my efforts on trying to discern the strange bumps and blotches on Roo's back following patch testing this week.  For those of you unfamiliar with patch testing, imagine 30 tiny, dime-size cups of various substances (oh you know, chicken, green beans, fish, wheat, that sort of thing) adhered with surgical tape to your back for 48 hours (see Exhibit A).  Stinky? A bit.  Uncomfortable? A little.  Informative? We'll see.  Roo goes for his final reading with the allergist today.  To me it looks like something flared overnight, but as we all know, I've been wrong before.

Exhibit A

Monday, November 15, 2010

Not yet...

Still waiting on those polyp results.  Perhaps tomorrow?  Our CNP is contacting the pathologist to find out what's taking so long.  Fingers crossed.

Wednesday, November 10, 2010

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.

Tuesday, November 9, 2010


RAST results are in.  New additions to the life-threatening list...

Macadamia nuts

and of course...the dreaded peanut, which we already knew about.  Could really use a little good news this week. 

Saturday, November 6, 2010

Same day. Different hospital.

Sooooo...let's just say things didn't go exactly according to plan yesterday.  We started out well enough with Roo and I both surprisingly chipper to be up well before dawn.  He was a regular bundle of cotton candy and kisses, spotting city buses with a commuter's precision, singing endless verses of The Wheels on the Bus, practically bursting the seems of his blue stripey pj's and woolen winter hat with incomparable cuteness.  It wasn't until we neared the hospital 30 minutes away that he started to wane.

"I want my Kaloo." 

Oh crap.  Kaloo.  Imagine my horror at realizing mere moments from IV insertion, that I had forgotten Roo's beloved Kaloo bunny at home.  I mean, we don't go to the grocery store without Kaloo.  Surgery?  Are you kidding?

Somehow we made it through the procedure but it wasn't pretty.  He had a rougher time coming around from the anesthesia than I've grown accustomed to, and the fact that he was hacking like a seal and spewing bloody saliva afterward didn't help matters.  That hadn't happened before. 

The immediate results from the scope were mediocre at best.

Good news: the GI doc performing the scope did not see evidence of furrowing or white plaques that were spotted last time.
Bad news: There's a polyp in Roo's esophagus and he has no idea what it is.

Obviously we won't know anything definitive until the biopsies are back late next week.  Until then, we wait.

Having conquered the beast that is toddler surgery, Mufasa and I were all too happy to turn into bed early to face the polyp issue with clear heads in the morning.  Our sweet dreams were soured, salted, and stewed at 2:30 am when Roo awoke barking, sobbing, vomiting, and gasping for air.  I've experienced the Stridor of Croup a few times in this motherhood stint but this was different.  The kid couldn't catch his breath, his stomach was sucking in so far in with every breath I swear I was seeing his spine.  He was throwing up and choking.  Then his lips started getting a little blue.  Off to the ER.

Two breathing treatments, a second IV in 24 hours, plenty of steroids, more vomiting, 2 rectal temps, and 4 and a half hours later we came home.  He's bruised, coughing, exhausted, and covered in medical tape he won't let us peel off, but as usual, still smiling.  So hoping tonight is less eventful.

Thursday, November 4, 2010

Zoo pals to the rescue

At the urging of our new allergist, Roo's MedicAlert bracelet has been ordered.  It's supposed to help protect him in the event of an anyphylactic emergency, among other possible catastrophes.  Basically, we spent $30 on a mesh strap decorated with zoo animals.  He's supposed to wear it on his wrist at all times.  Engraved on it are the words SEVERELY ALLERGIC TO PEANUTS. Egg and Milk Allergy. And a 1-800 phone number for the MedicAlert hotline.  So that's all great and everything, but what are the chances he keeps it on in the first place?  And call me a cynic but in the event of a true emergency, as he's wheezing, swelling, and gasping for air, who pray tell, with the possible exception of a well-seasoned paramedic team, is going to think, oh, what a cute bracelet!  I should see if there's any info about this kid's medical history engraved on it.  Anyway, I ordered one.  Marketing ploy to play on parents' worst fears is highly effective. 

We've been busy on other fronts as well.  Pre-op physical - check.  RAST blood draw - check.   Four vials of blood in exchange for a stuffed animal camel.  And alas tomorrow's the big day for scope #5.  That's all for this week.  The little ninja gets a brief reprieve next week, then we're back to 3 a week allergist appointments for patch testing.  And so it goes.  I'll post scope results when we have them next week.