Kal’s Story …part 2

Click here for part 1 of Kal’s story

The day of Kal’s peanut challenge in April finally arrived, and Kal had miraculously remained healthy for more than a week prior to the test.  Zax even had an extended school day so we didn’t have to pick him up in the middle of the test, which meant that hubby and I could both attend the challenge.  We were psyched for a potentially three-hour test.  We had toys and games, the office had toys and movies, and we had chocolate to help make the medicine go down.  Everything was aligned.
The first thing they said upon our arrival was that it had been nearly a year since Kal’s peanut skin test, so they wanted to perform another one.  Even as I consented, I began to feel irritated.  We were ready for a three-hour test, but I knew that if the skin test yielded higher results this time around, they would halt it right then and there–and just like with Zax, I was going to need to know whether the allergy was real no matter how big the number.   What was even more annoying was the fact that Kal and I could easily have come in prior to challenge day for a skin test and gotten that part over with.
Over the next several minutes, I knew that things were not going well.  The welt on his back grew to quite a large size.  When the aides came back in, they were shocked at the size of his reaction.  As was entirely predictable, they were unwilling to perform an oral food challenge now without the doctor’s approval.
What followed was a whole mix of emotions for me.  Just like with Zax, I needed to know whether the reaction was a false positive or indicative of a real allergy, which meant I needed to have him do a food challenge.  But more than that, I felt horrible about having waited so long.  I’d heard that delaying introduction could actually increase the chances of an allergy, and that seemed to be exactly what had happened.  It hadn’t seemed like a very big concern until now.  I tried not to get too preoccupied with this theory–after all, it was possible that his first skin result was small and all subsequent results would be larger, much like an initial oral reaction can be minor but later oral reactions can be increasingly severe.  In fact, this second theory has comforted me somewhat.  It makes me feel less like I created a preventable peanut allergy in Kal.
But at any rate, we weren’t done yet.  I spoke at length with our allergist, having the same argument I’d had before we did Zax’s peanut challenge.  I’m not comfortable saying that my children have allergies without a reaction.  Kal would be starting preschool in the fall, and I wanted to know before then.  I had a history of false positives, and I wanted to make sure that Kal’s reaction was real and not a false positive of his own.
Because of the extreme nature of Kal’s skin reaction, our allergist was even less willing to let Kal do the challenge than she had been for Zax.  “Aren’t we the anomaly?” I asked.  “Don’t most people come to you only after having a real-world reaction, rather than doing testing before eating a food?”
“Yes,” she replied.  “And some of them go straight into anaphylaxis the first time they eat a food.  Do you really want to risk that?”
“If it means his first exposure is in a controlled environment where all the drugs are readily available, thereby reducing the chances that we would find out by accident in a much more dangerous setting, then yes.”
The allergist finally granted us a reduced sort of food challenge.  The first thing she wanted to do was spread peanut butter on his skin and wait to see if anything happened.  Then we would proceed to spreading some on his lips.  Even if he failed to react to this, she didn’t want to take the test any farther.  We would be assured that he wouldn’t react to casual contact, and thought that ought to be enough for us.
It wouldn’t have been, of course.  I knew that if Kal passed this challenge, I would be back on the phone, pushing for another challenge to still find out whether or not Kal had an allergy.  But one thing at a time.  This might be all we would need in order to confirm an allergy.  So shortly after Kal’s third birthday, we performed the challenge.
Kal had no reaction to the peanut butter on his skin.  Next they brushed some on his lips.  Unlike with Zax’s test, they told Kal not to lick at his lips–a feat he managed fairly well for a few minutes.
About ten minutes later, Kal said that his lip hurt.  Upon inspection, the skin below his lower lip was turning red.  Well, darn.  Another allergy confirmed.  We ended the challenge and they gave him Benadryl.  Then we stayed for observation.
Zax and Kal’s peanut challenges weren’t exactly equal, since Zax licked his off right away and Kal only licked a little bit, but I still found it interesting the differences between their reactions.  Both of them had level 4 skin reactions, but Kal’s was much larger.  However Zax was screaming within a minute of the peanut butter touching his lips, and Kal took ten minutes to complain that his lip hurt.  In fact, hubby and I couldn’t help but observe that Kal’s challenge was a bit anticlimactic.  After all the warnings and concerns that he was going to drop dead the moment peanut butter touched his skin, his reaction was much smaller than his brother’s.  Which is a big part of why I pushed for the challenge–because no matter how helpful they are, skin tests aren’t infallible, nor a perfect indicator of what will happen.
The hardest part about Kal’s diagnosis has been the fact that we haven’t been thinking of him as allergic until four months ago.  The safety routines we’ve done with Zax since infancy have helped Kal by association, but we’re only just beginning to teach Kal the vocabulary he needs to use, and helping him to realize that certain foods can hurt him.
The good news about Kal is that at the same time that we confirmed his peanut allergy, we also got him a prescription for albuterol in an inhaler.  We’d been concerned about what we would do if he needed treatment during preschool, and they told us that some little kids can get the hang of an inhaler with a spacer and mask, and that he could take several breaths through the spacer–he didn’t need to get it all in one breath.  They demonstrated the method, and we took our new prescription home.
I have to say that I LOVE giving Kal his inhaler.  It makes life so much easier.  No more making Kal wait for treatment in the morning.  No more trying to figure out how to schedule another 20 minute TV session for another neb.  The last few times Kal has gotten a cold, I’ve been able to set a timer for 4 hours and give Kal treatment the maximum number of times during the day.  And in my opinion, it has helped a great deal.  He’s gotten over the last few colds much more quickly than before.  Of course, because he’s only 3, Kal doesn’t do every puff as well as he ought, but it still works much better than previously.  I love using the inhaler so much, I’ll be asking for his Pulmacort in this form the next time I take Kal to the doctor.

 

Kal is just beginning to learn how to deal with this life our family lives.  We have high hopes that he will turn into a good self-advocate, just like his brother.

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2 thoughts on “Kal’s Story …part 2

  1. Thank you for this post/blog! When I push my allergist for food challenges, I'm always made to feel like I'm being reckless, when I feel like it's the responsible thing to do. I wish that more allergists took the family's preference for a food challenge into consideration. After all, if it isn't actually safe, why are they doing them at all? And until you live with a food allergy yourself (diagnosing them is different) you can't possibly understand all of the stress they cause. Even a positive reaction to a food challenge is informative (we've had some that he's passed and some that he hasn't) and my son is fine afterwards.

  2. Thanks for your comment! We've felt the pressure when asking for challenges too, but I always persist. (I think our allergist is relieved that both boys' allergies are confirmed now.) My view continues to be that it is much safer to find out in a challenge, and that way you know whether you need to panic if they get their hands on the food by accident–well, act first, panic later! (if you can)

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