Kal's Story

(Originally posted in two installments (1, 2) in October of 2014.)

When Zax was a baby, the prevailing infant feeding advice was to delay introduction of highly allergenic foods.  However, by the time Kal joined our family in June 2011, I’d seen a lot more advice suggesting that allergenic foods should be introduced earlier to lower the baby’s chances of developing allergies.  I asked our allergist whether she recommended that, but she thought that with both a brother and a mother with allergies, we should still delay allergenic foods for Kal.  This is advice I regret taking, but more on that later.

Our infant Kal seemed to be in better shape than his brother had been as a baby.  Kal never had any eczema, and we successfully introduced eggs to him at 10 months without any problems.  He had a couple potential issues with other foods, but nothing we could nail down as a reaction.  The skin around one eye got red a few times, but in each case it seemed just as likely that he’d rubbed food in his eye than that he was having an allergic reaction.  We were a bit wary at times, but in each case we were able to successfully re-introduce the troubling food without incident a few weeks later.

We successfully introduced Kal to all of the “big 8” foods except peanut and tree nut by his early toddler years.  In fact, we even got him introduced to a few tree nuts too--as we slowly tried some of those on Zax, we tried Kal as well.  And he tolerated them just fine.  (You can read “we” as “hubby.”  I watched from a safe distance with Zax’s EpiPen clutched firmly in my pocket, not wanting to get too close to messy eaters eating my personal poison.)

During the summer after Kal turned one, he started coughing and I assumed he was getting a cold.  However, the cough lasted for a long time and Kal never showed any other signs of sickness.  I wasn’t sure what was going on with him.  Then one day, I caught myself reaching for my inhaler because the wildfire smoke in the air was giving me trouble breathing.  I stopped cold, realizing that if the smoke was bothering me (with asthma,) and Kal was coughing with no known cause, but hubby and Zax were fine, then that probably meant that Kal had asthma too.

Off we went again to Colorado Allergy and Asthma Center to see what they thought of Kal’s lungs.  They were unable to officially give him an “asthma” diagnosis because he was too young to perform lung function tests (the way to diagnose someone with asthma has apparently changed since I was a kid.)  They did listen to him, and examined him, and gave him a nebulizer treatment of albuterol in the office.  They decided that, at the very least, Kal had Reactive Airway Disease, and sent us home with a prescription for albuterol.

Such was it that a nebulizer came into our household.  At the beginning, Kal HATED the nebulizer.  He would cry and squirm his way through the entire treatment, and we would have to hold the mask firmly over his face to make sure he inhaled everything.  We tried talking to him and reading to him and having his big brother dance around in front of him.  Finally, we gave in and let him watch TV, and that was what finally distracted him enough to stop crying through the treatments.

The TV felt like a minor defeat, because we had been trying (pretty successfully) to follow the AAP suggestion that children not get any screen time until the age of 2.  We had managed this with Zax, with the exception of home videos and the occasional big event (like a Superbowl Party.)  We’d been doing the same with Kal, limiting Zax’s screen time to Kal’s naps, until the nebulizer.  But what else can you do when sitting still with a one-year-old for 20 minutes every day?

After a few weeks, I was sure that the nebs were helping Kal.  Not only would it improve his symptoms, but there was one day when I was getting settled to hold Kal on my lap for the neb.  He reached for the mask and pulled it to his face.  Quite quickly.  I knew then that Kal must be getting relief from the nebulizer.

A few months later, as we entered into cold season, our doctor suggested that we use a daily inhaled steroid in addition to the as-needed albuterol.  We’ve occasionally tried to back off from this during non-cold seasons, but for the most part, this is when we established our current bedtime routine:  pajamas, teeth, nebulizer while watching a 20 minute TV show, stories, bed.

The nebulizer has been a blessing, except when it’s not.  I love that Kal’s meds go straight to his lungs just like an inhaler, rather than being metabolized all over his body like the oral meds I had as a baby (which used to make me incredibly hyperactive in addition to the struggle it was for me to take them,) but I dislike how long it takes to get him treated.  During a cold, when they want us to give him the steroid twice a day in addition to as-needed albuterol treatments, we can be looking at a couple hours on the couch every day.  That can be very hard to do, especially when we have to schedule things around his older brother’s school/activities.  On more than one occasion we’ve come home late from an evening activity and had to make a tough choice:  deprive Kal of a half-hour of sleep in order to do a neb, or send him to bed on time but deprive him of the nebulizer.  This is particularly hard if we suspect he’s getting sick--extra sleep is what the body needs in order to fight off the infection, but if his lungs aren’t functioning properly he won’t fight it off anyway.  It’s a decision I hate to make, but one that continually comes up because life gets in the way.

I also hate it when Kal wakes up and clearly needs treatment right away.  We are not morning people, and our mornings typically have exactly enough time to get ready and out the door to wherever we need to be.  I often had to make Kal wait until his brother got to preschool before giving him a neb--but I’ve woken up having difficulty breathing, I know how it feels, and it always tore at my heart to make him wait for treatment.

When Kal turned 2, we went back to CAAC for a post-cold-season assessment.  They recommended that we scratch-test him for some allergies to see if his asthma had any underlying triggers, and I agreed.  I didn’t get what I expected, however.  I thought they’d been referring to environmental allergens, but in that regard, they only tested him for three molds and for cat and dog.  The rest of the test was devoted to peanuts and tree nuts.  I’m not sure why anyone in the office thought those could be underlying triggers, because he never ate them.  In fact, the few tree nuts he occasionally ate (Nutella) they didn’t test him for, because he ate it successfully at home.  I was irritated at how that was handled, but the fact remains that the test was done.

The results said that Kal was allergic to cat, dog and peanut.  Cat was the only significant reaction, however.  Dog and peanut were both small.  In fact, they said that peanut was below the threshold at which people can usually eat it safely.  They recommended we do peanut as an in-office food challenge for his first taste, however, because of our family history of allergies.  Just in case.

Hubby and I hemmed and hawed over this suggestion.  Should we do the food challenge just to get it over with?  Should we wait until he was a little older and better able to communicate how he feels (like we’d done for Zax)?  Should we just challenge peanut ourselves at home?  We couldn’t agree, and eventually our indecision turned into inaction as other concerns pushed this to the back of our minds.

Months passed, and then one day during the winter, the allergist’s office called and asked if we wanted to schedule a peanut challenge since we’d already signed the release forms.  I decided to make a decision at that point, and said yes.  Yes, let’s schedule a peanut challenge for Kal.  The food challenge schedule was full for the next few months, though, so we set a date in February and sat back to wait.

February, of course, is smack in the middle of cold season, and much to our chagrin, Kal started coming down with a cold two days before his scheduled challenge.  They’d told us they wanted him healthy for the week prior to his test, which seemed like a tall order for a toddler in cold season, but this particular cold was too strong to even consider fudging the rule.  It was just starting up, he was miserable, and there was no way we were going to be able to perform the test.  The food challenge office was about to go through some staffing changes, which meant we couldn’t reschedule until April.  Grumble grumble.  More waiting.

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!