Friday, October 31, 2014

Happy Halloween!

Have a Happy, Safe, and Spook-tacular Halloween, everybody!

Peanut and egg free Halloween lunch!

Wednesday, October 29, 2014

Teal Pumpkin Project!!!

Have you heard of the Teal Pumpkin Project?

The idea is that you paint a pumpkin teal (the food allergy awareness color) and display it outside your house on Halloween.  You can also print up a sign to display with the pumpkin.  The teal pumpkin tells people with food allergies that you have non-food treats to give away in addition to candy.  This is great for kids who have a hard time finding candy they can safely eat, and for anyone else who wants to limit their candy supply.

When we heard of the Teal Pumpkin Project, we thought it was a great idea and decided that we would participate!
The boys painting our teal pumpkin
I had to take over to get it finished
A selection of non-food goodies
What's this, you ask?  It's the logo for Allergy Superheroes!
What's that?  Well, stay tuned!  I'll have more
details soon!

We even found a teal pumpkin when we attended Boo At The Zoo at the Denver Zoo!  Unfortunately, it was sitting on the ground by an empty table (the fact that the grounds were closing in less than an hour might have had something to do with that.)  I wish we'd found this pumpkin earlier in the day--I would have loved to see whether they were really part of the Teal Pumpkin Project, and what they had to offer!

You can click here for the story of how the Teal Pumpkin Project got started.

The following is an excerpt from the above link:
If you would like to take part in the Teal Pumpkin Project, all you need to do is:
  1. Paint a pumpkin teal and place it on your porch. This lets other families know that you have non-food treats available at your home.
  2. View a list of recommended non-food prizes and treats from Kids With Food Allergies (this list can be used for Halloween, school and other celebrations).
  3. Print out the poster and place it on your front door.
  4. Keep your bowl of non-food treats separate from any candy, to ensure that the non-food items stay safe.
Just a few more days!  Have a Happy and Safe Halloween!

Monday, October 27, 2014

Trick-or-Treating with Food Allergies

To be honest, I've never worried very much about trick-or-treating.  Dressing up in a fun costume and racing from house to house is fun in and of itself, regardless of whether you can eat all the candy once you get home.  Yes, my kids always receive some items that they can't eat, but (nearly) everything is individually wrapped so contamination risk is relatively low.

Our evening usually goes something like this:

Trick or Treating, 2013
After dinner, we all dress up and pound the pavement.  We typically leave a cauldron of candy outside our front door while we're out.  Our neighborhood is interesting--not many houses are open for business (probably between 1/4 and 1/3 have their lights on) but those that are open give out candy by the handful.  As a result, after two blocks, the pumpkin buckets are full and it's time to head back.

The unsorted haul, 2012
Once we're home, we let the kids pick out three pieces to eat (which we clear before they can open them.)  Then we do a quick scan of their candy, looking for the few items that nobody in the house can (or is willing to) eat.  If any more trick-or-treaters come by, we hand that candy back out.

Once the boys are in bed, hubby and I spread out all the candy and start sorting.  We usually group all the different types of candy together so we can get a better look at it all.  We read labels, pull out all the candy that neither boy can eat (or that has no ingredient statement at all), and swap some items that Zax can't eat over to Kal's supply.

Even after everything dangerous has been removed, we're still left with way more candy than we're willing to let the boys eat.  Halloween candy lasts for months in our house--we allow them to choose it as a dessert option, but usually limit them to three items at a time (two if something they choose is exceptionally large.)  Years ago, I got tired of the less popular items lasting until June and decided that we would make an effort to keep the volume under control.  So hubby and I remove more items from the piles.  We take out the items they aren't fond of, and reduce the rest until we feel that everything will be gone before Valentine's Day candy gets added to the stock.  Some day, we will involve the boys in this decision-making process.  For now, we just make the executive decisions.

So what do we do with the candy we've removed?  Well, hubby and I keep some of it.  We do not keep our house strictly allergen free, although we segregate and have very firm rules about cleaning hands and surfaces that allergens touch.  (This also applies to Kal when he eats things Zax can't eat.)

For the rest of the candy, we discovered this really great program a few years ago called Halloween Candy Buy Back.  It's an initiative to keep kids (and their teeth) healthier.  You bring your unwanted candy to a participating dentist's office, and the office pays your child $1 per pound of candy.  Many offices have other goodies as well.  The offices then send the candy to Operation Gratitude, which mails packages to deployed service members.  So our kids get cash for the candy they can't eat (plus their surplus supply) and our troops get a care package.  Win-win!

** We have a firm "No Candy Until We Get Home" rule while the kids are trick-or-treating, but this rule extends well beyond allergies.  Even my husband remembers this rule from his childhood, and he doesn't have any food allergies.  What he did have were tales of the rare sicko putting razor blades in candy, so his parents always inspected everything before he was allowed to eat it.  Now that we're the parents, we inspect for open wrappers, allergens, and (because we live in Colorado) marijuana edibles.  It's just a safe thing to do, no matter what your kids can and can't eat.

Have a Happy and Safe Halloween!

Friday, October 24, 2014

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.

Wednesday, October 22, 2014

Kal's Story ...part 1

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.

Check back Friday for the rest of Kal's story!

Monday, October 20, 2014

Saying "I Do" Food Allergy Style

A month ago, my husband's brother got married to a wonderful woman.  It was a beautiful ceremony, and in our family, one of the most exciting parts was our children being ring bearers for their uncle and new aunt.

This was only the second wedding we've been invited to since having children, and the first we've been able to attend.  A few weeks before the ceremony, it dawned on me that I would need to provide Zax with a cupcake for the wedding, just like I do for birthday parties.  And then I wondered if I could plan ahead for the wedding food.

I got the caterer's phone number from the bride and called ahead.  I easily learned that the wedding cake would be safe for Kal and myself (no peanuts or tree nuts--it did have egg, of course,) but beyond that, the caterer seemed less than eager to discuss the subject with me.  I stated that we would not only be at the wedding but in the wedding, I specified our three allergy concerns (peanuts, tree nuts, and eggs) and asked if we could find out which items would be safe for us to eat.  The man rattled off a few things he knew off-hand--a certain dip had pecans, a certain salad had almonds, the pastas would have egg--and then said he wasn't sure of the rest and would have to pay attention while preparing the foods.  They would know the day of the wedding.  Would he specifically be at the wedding?  Yes, plus his employees would know all this information.  Not exactly what I'd been going for, but at least I knew who to contact on the wedding day.

Fast forward to the big day, and the ceremony was beautiful.  Our kids provided plenty of "cute" moments, like blowing kisses down the aisle and Zax not wanting to leave the podium after delivering his ring.  Because all our menfolk were in the wedding party, we stuck around for the pictures afterwards.
How many weddings get graced with the presence of this
many heroes?

By the time I got into the reception hall, the appetizer station was pretty picked-over.  The caterers were milling around behind the buffet table, though, which gave me a good opportunity to ask them about allergens.  I went up, introduced myself, discovered which one was the boss, and repeated my query regarding which foods we could safely eat.

It was at this point that I realized this caterer was not very allergy aware.  The pecan dip he'd previously mentioned was smack in the middle of the veggie display on the appetizer table, so he told me not to have any dip.  No recognition of the fact that the dip was streaked all over the remaining veggies from where people had spilled it.  No raw veggies for me (and a shame I hadn't made it inside earlier.)

Zax couldn't eat any of the salads, due to toppings or the dressings.  He couldn't have the bread, because it had egg.  He couldn't have any pasta dishes for the same reason.  Many of these answers came after a good deal of pondering.  The green beans were safe, as was the roast beef.  And the chicken... "What do you think?" the head caterer asked one of his employees.

Talk about exasperation.  The only reason I hadn't pressed for him to check his recipes and call me back was his assurance that he would know this information the day of the wedding.  I had warned him of our allergens, so he knew what I needed.  In fact, I would think that any caterer ought to be familiar with the top 8 allergen content of their menu because of the rising incidence of food allergies.  (Or maybe that's just wishful thinking.  It has been a long time since I've been at a wedding.  I guess it's not any different than a restaurant--and they're all over the place.)

So Zax was able to have green beans, roast beef, and whatever raw fruits and veggies I could salvage for him from the appetizer station.  He didn't want to eat the beans without his blue cheese dip, and didn't want the roast beef without ketchup, so he survived the day on a handful of raw carrots and strawberries.  And you know, I hate it when people put egg in their bread.  At least if Zax could have eaten that, I could have filled his tummy with calories if not many nutrients.

Kal had a wider selection of safe foods, but still didn't eat much.  He could've had salad, but doesn't like it.  He could've had meat, but isn't much of a carnivore yet.  He tried the macaroni and cheese, but this being gourmet wedding food with pepper and other spices mixed in, he didn't like it.  He survived on Zax's diet plus bread.

The boys didn't care too much that their lunch was small.  They had a reception hall to explore, and grandparents to drag around the grounds.  Plus, there was cake.  How often are you allowed to fill up on cake in the middle of the afternoon?

The wedding cake

Zax's cupcake
Of course, while the rest of us ate wedding cake, Zax ate the cupcake I brought along.  My goal had been to make it resemble the wedding cake, if only slightly.  My blue was too turquoise, it should have been teal, but oh well.

So what did I learn from this experience?

  • Kids don't care much for wedding food.  This is probably true even of kids with no dietary restrictions.
  • If able to call ahead, push harder.  Next time, I will insist on getting this information prior to the wedding.
  • Never underestimate the power of dip, and pack accordingly.
  • Don't forget the cupcake!
  • And lastly, I should bring a backup soy butter sandwich apiece, just in case.  

Friday, October 17, 2014

Zax's Story ...part 2

Click here for part 1 of Zax's story

At 3 ½, Zax was getting ready to go to preschool, and I decided it was time for us to know more.  Specifically, I wanted to know two things:
  1. Could he tolerate egg in baked items? (Many egg-allergic people can.)
  2. Was he really allergic to peanut?

Zax’s allergist was more than willing to grant him a food challenge for a baked item with egg in it, but she pushed back hard when I suggested we do a peanut challenge.  “His skin test is a 4,” she told me.  “It’s very inadvisable.”  I told her I understood her arguments but asked her to listen to mine.  In the first place, I wasn’t comfortable calling him peanut-allergic indefinitely without a clinical reaction.  If he wasn’t allergic, there was no point in us living such a paranoid lifestyle.  Some people might be content with just test results, but that wasn’t me.  In the second place, I knew, not only from the internet but from personal experience that false positives on those tests are relatively common, and since his genes were partially my genes, it seemed plausible that he might have inherited the propensity for them.  And lastly I mentioned the JC Penny incident (see Zax's story part 1).  Yes, it wasn’t conclusive since he hadn’t bitten into the peanut m&m, but since nothing at all had happened I thought it was worth a closer look.

I think it was my final argument that swayed her.  Grudgingly, she agreed to the challenge, after wanting me to understand again (and again, and again) that she still advised against it.  I understood, and we went forward.

We scheduled the baked egg challenge first, figuring it would be less traumatic if both challenges were positive (and we didn’t want his fears/behaviors to get in the way of the test results.)  They asked me to bake something that required two eggs, baked at 350 degrees for 30 minutes, and bring one piece (1/12) of it.  A box of brownies did the trick.

The day of the test, we got situated in our allergist’s food challenge room (which, fortunately, was filled with movies and TOYS!)  The aides started by checking his vitals and examining his skin.  Then they cut the brownie in 1/4ths and fed him them at fifteen-minute intervals.  Shortly after he ate his second small serving, he reported that his throat hurt.  The aides checked him over and saw no visible symptoms, and then told me that while they weren’t seeing anything, his report told them he was starting a histamine reaction and that if we kept going, it was only going to get worse.

I was surprised that she seemed to be expecting me to push for more, and that she sounded willing to do so if I insisted.  “I was done,” I told her.  “I’ve felt that feeling, I believed him, and I knew exactly what it meant.  All we wanted to know was whether he could tolerate baked egg, and now we had our answer.”  They treated him with Benadryl.  Then we waited (and played) for observation before heading home.

He later told me he’d started to feel funny after just ¼ of the brownie, but he had wanted more chocolate.  He hadn’t wanted any more by the time we called the test quits.  Doing the math, that means he was reactive to at least 1/24th of an egg, and had sounded the alert at 1/12th.  Not that it matters, but I’m a numbers person.

A few hours and a Benadryl-induced nap later, the reaction came back for round two in the form of a horrible stomachache and diarrhea.  While I’ve heard that allergic reactions can cause these symptoms, I’d never before seen or experienced them as part of a reaction to food allergy.  My theory is that I, personally, had never been able to ingest enough nuts for them to wreak havoc on my digestive tract on the way out, and Zax never had before either.  This time, however, since he’d eaten a significant amount of the egg, it was going to have to go all the way through him.  He also reported that his throat hurt again, but a different hurt, and when I looked into his mouth I saw that he had several canker sores.  We called the doctor (who said canker sores were possible but rare after allergic reaction), and we re-dosed with more Benadryl and Zyrtec.  He had a painful few hours, but finally it was over.

The next step, a few weeks later, was the peanut challenge.  I was relieved that the ladies performing the test weren’t giving us any flak that would make us feel like bad parents.  We needed to know, so there we were.  Despite his reaction to the egg, Zax was thrilled to be back in the food challenge room because it meant he could play with the cool toys again.

The peanut challenge was done more incrementally.  The first step would be to rub a dab of peanut butter on his lips, and if nothing happened, we would move forward in larger and larger doses.  My husband and I brought along chocolate chips to eat with the peanut butter, in case he didn’t like the flavor on its own.

Once again the ladies took all his vitals, and then they placed a dab of peanut butter on Zax’s lips and rubbed it around like chapstick.  He licked at it a bit and said “Mmm!”  “Good sign,” I thought.  Once again, the ladies said they’d be in the next room if we needed them.

Less than a minute later, Zax was screaming.  “NO!” he kept repeating, and saying he didn’t like it.  He wanted water.  I told my husband to run and get the aides while I carried him to the sink.  He tried to rinse his mouth out when the ladies came rushing back.  They looked at him and his mouth very briefly, and then whipped out the epinephrine.  He was scared of the shot and knocked the aid’s hand away, so she had to stick him twice.  After the epinephrine, they also gave him Benadryl, a 24-hour antihistamine, and a steroid that should prevent inflammation.  Considering his complications the previous time, they wanted to cover all his bases.  We stuck around for another hour, with frequent checks by the aides.  Before long he reported that he felt fine, and during their final check he said that he felt good all the way down to his toes.

I wanted to make sure Zax understood what to look out for in the future, so after both of these challenges, once the smoke had cleared but the memories were still fresh, I got up close to him and asked him to remember what he felt like.  “Remember hard, so you won’t forget it.  And if you ever feel this way again, tell a grown-up.”  Even an allergic reaction can be a teaching moment.  To this day, if he starts to have an allergic reaction, (and he’s had a few minor ones) he reports that his mouth “feels like egg.”

Statistics say that kids are likely to outgrow egg as an allergy, but Zax is approaching his sixth birthday and hasn’t done so yet.  I try not to get my hopes up about that.  If he outgrows it (or any of his allergies), great, but if not it just means he’ll become an allergic adult, like me.  And whatever happens, we’ll deal with it.

From this summer.  Foods are on the
right, egg and peanut are the top two
and Brazil nut is the third
At one of Zax’s more recent allergist checkups, they tested him for all of the tree nuts instead of just a mix.  Due to my allergies, he seldom eats them and has only tried a few varieties.  He came back with a smaller (but still present) reaction to Brazil nuts.  We have not challenged that one, but I don’t think he’ll encounter them very often.  After all, I’m allergic to tree nuts and when I saw that test result, I said “What the heck is a Brazil nut?”  Clearly, I haven’t encountered them often either.  (Although the Rio 2 movie brought them into better focus for both of us.)

So Zax has been learning how to navigate the world with food allergies.  He knows to ask--an ADULT!--whether it has “egg or peanut or nut” any time he’s offered food.  He knows that he isn’t supposed to have any if the answer is “I don’t know” or “I don’t think so.” He knows the rule “Never touch food on somebody else’s plate, and never put your food on somebody else’s plate.” He knows that he’s supposed to tell an adult if he feels himself having a reaction.  We go over these safety routines on a frequent but irregular basis, to provide repetition and make sure they’re still fresh.

Zax is turning into a pretty good self-advocate.  One day in kindergarten he hadn’t finished his lunch, and said it was because he needed to wash his hands so he ran out of time.  Then he reported that he had to wash his hands because he accidentally touched his friend’s “egg pie.”  I have no idea what the little girl was eating, but I was very proud of him--and told him so--for taking care of himself.

And that’s my highest hope for my allergic child--that he will learn to expertly take care of himself.

Wednesday, October 15, 2014

Zax's Story ...part 1

Zax came into our lives in October of 2008.  He was a wonderful baby and, apart from a bit of eczema, was pretty healthy.  Because of my own allergies (and particularly having heard the story of my own first experience with egg) we were very cautious about introducing new foods to him.  We introduced one food at a time, spaced four days to a week apart, and watched carefully for any signs of allergy.

Things went fine until he was about 10 1/2 months old.  I purposefully scheduled Zax’s first taste of scrambled eggs on a weekend when my husband would be home to keep me company.  I also introduced the egg well before his first birthday, because there was no way his first exposure was going to be in his birthday cake.  I wanted to know beforehand.

It's very hard to get a picture of red, blotchy skin
After a handful of bites, we began to notice that something was wrong.  Zax was fussy, more so than with previous foods he simply hadn’t cared for, and was rubbing at his face.  We stopped giving him the egg and cleaned him up, including changing his clothes.  He was starting to get a bit red at that point, but strangely that ended at the neckline of his shirt, like he was only getting red where he’d gotten the egg on his skin.  We monitored him and he gradually improved, eventually taking a nap and having everything cleared up at that point.

We called the pediatrician, who immediately referred us to the Colorado Allergy and Asthma Center.  We set up an appointment and took him in.

It later occurred to me how ironic the situation was.  I have food allergies, and to be honest I almost expected a reaction from him, yet I didn’t have the slightest idea of what to give him.  I’d never browsed the pharmacy for children’s allergy medication, and I’m grateful that his initial reaction wasn’t worse.  If he’d gone into anaphylactic shock, I probably would have given him my own epi pen before racing off to the hospital, but fortunately that didn’t happen.

The allergist performed a skin test for the eight most common allergens.  Zax bore it well, and didn’t fuss much.  His results came back positive for egg, which we expected, and also for peanut, which we did not.  The kid had never eaten peanut so it seemed strange that he could already be allergic to it.  When I considered my own history of false positives on skin tests, I knew that at some point I would want to challenge the peanut diagnosis, but that would have to wait.  Several years, in fact, until he was old enough to speak and mature enough to describe how he felt.  For the time being, we would consider him allergic to both egg and peanut.

Even though I’d known he was allergic since the day he ate scrambled egg, I still felt disappointed by the diagnosis.  In fact, my first thought when they read the results was “Really?  He didn’t get the memo that he was supposed to take after his daddy?”  It was short-lived though, as I was already rearranging things in my head, thinking of how to incorporate these new foods into my existing food-avoidance routines.

The staff at CAAC seemed surprised by my attitude.  Did I have questions?  Not really.  This is my normal, just with new foods.  I knew that they would be appropriately labeled thanks to the Food Allergen Labeling and Consumer Protection Act.  I wasn’t even that concerned about finding substitutions for egg.  I figured the internet would tell me everything I needed to know.

They brought in an EpiPen and tester and started to show me how to use it.  I pulled out my own and said “You mean like this?”  I declined to schedule a follow-up appointment a few weeks later, as they admitted it was just to address questions people encountered as they adjusted to an allergic lifestyle.  I did, however, schedule a special appointment for them to test for and administer his flu shot, since the vaccine is incubated in chicken eggs.

Life went on from that point without too much fuss.  Zax was still a baby, so we didn’t typically order him restaurant food anyway.  Baking without egg proved to yield rather flat results (literally), but things still tasted fine.

We had a few incidents.  At 20 months, a second cousin gave him a cookie which made him cough before anyone discovered he had it.  At age 2 he stole a piece of pasta that had an egg-laden alfredo sauce, and that time, nothing happened.  We hoped that meant he was outgrowing the allergy, but his next annual exam showed that his numbers had not diminished in the slightest.

At age 3, a few months after Kal’s birth, we were at JC Penny taking some family pictures.  I had brought along some plain m&ms to ensure Zax’s cooperation and smiles in the photos.  While many peanut allergic folks avoid plain m&ms due to their troubling “may contain peanuts” warning, we had had no problems with them.  (My relationship with “may contain” products is complicated, and probably the subject of another post.)  It was good we had them that day, because we needed a few bribes incentives to get Zax through the pictures.

After the photo shoot, my husband and I were looking at the results while Zax watched the movie in the waiting area.  After a while, he came running up to me asking if he could have some m&ms.  Knowing that waiting was boring for a 3-year-old, and that we still had a while to go, I said “yes” and reached into my bag for the m&ms.  To my surprise, instead of eagerly awaiting my offering, Zax ran off.  He went up to a strange woman in the waiting area and held out his hands, and I watched almost in slow-motion as a very fat m&m disappeared into his mouth.

I charged across the room calling “Get that out of your mouth!  What kind of m&m is that?”  Zax obliged, looking rather shocked at my behavior.  The woman looked sheepish as she told me it was a peanut m&m, and, “I did tell him to ask!”

I pretty much ignored her after that, because I was focused on Zax.  The m&m he’d given me was still intact, but since those things break in the bag all the time, I figured the candy coating ought to have peanut residue aplenty.  How did he feel?  Was he doing okay?  I didn’t want to scare him, and also didn’t want to guide him towards giving me certain answers, so I started asking all sorts of silly questions alternating with important ones.  How did his nose feel?  How did his mouth feel?  How did his toes feel?  His throat?  His belly button?  His eyes?  His tongue?  His knees?  His chest?  He was giggling by this point, and reporting that everything felt fine.

You have to remember that at this point, the peanut allergy was unconfirmed.  He had positive test results but had never eaten any.  So while I continued to keep a close eye on him for the rest of the day, and asking him how he felt at random intervals, part of me was hoping that maybe the peanut was a false positive after all.

Check back Friday for the rest of Zax's story!

Monday, October 13, 2014

Preschool Snack Time

One of the most intrinsic parts of the preschool day is snack time.  For the last two years, the kids at Zax's preschool took turns being "Snack Kid" and bringing a snack to share.  They loved being the "special kid" for the day, telling everybody what they'd brought, and sharing some of their favorite foods with the class.

Zax on his first snack day.  He was very proud.
We were asked to send three items per kid when it was our turn doing snack duty:  a grain, a fruit (or vegetable), and a dairy.  Zax had a special bag of "safe snacks" in the classroom, for the days when one or more of the normal snack components contained his allergens.  The school was supposed to be peanut and tree nut free, but items containing egg still came in.  Zax never seemed to mind when he needed to have something different, because he loved his backup snacks.  Sometimes he even asked for them when the normal snack was safe.

This year, with Zax in kindergarten, Kal finally gets to attend preschool, and he loves it!  He thinks it's great that the school Zax used to attend is now his special school.

This year, the preschool has changed the way they handle snack.  Instead of the kids taking turns, the parents are supposed to send their kids with their own snack every day.  You might think that, being a food allergy parent, I would be thrilled with the new arrangement.  All of Kal's food is under my control now.  But I'm actually a little disappointed.  There are a few reasons why:

1.  Zax used to love it when it was his special day.  Yes, kids can take turns with other special duties, like line leader or show-and-tell, but I'll never forget the enthralled look on his face the first time he showed me that he had the snack basket to bring home.

2.  If I never have snack duty, I can never surprise the class with a fun or special snack.  And I enjoyed providing special snacks.  For example:

Pumpkin-shaped cheese for Halloween!

Accompanied by Banana ghosts!

Santa Babybels and apple wreaths for Christmas (along with the teddy bears in Santa's sack)!
Heart-shaped watermelon slices for Valentine's Day!

And my favorite, "hot dogs" for snack (bananas in a whole wheat hot dog bun with a squirt of jelly) for April Fool's Day!
Close up.  The jelly doesn't look very good in this one, but I got a better squeeze tube for school.
I'll admit that these reasons could sound selfish.  And yes, I can always surprise Kal with this sort of fun snack on his own.  But stay tuned, I have other reasons for lamenting the loss of the communal snacks:

3.  Exposure to wider flavors.  Because of preschool, Zax decided that he likes bagels.  I have nothing against bagels, but I seldom buy them.  And while I could never convince him to try cream cheese at home, the peer pressure at school got him to try it, and admit that he likes it.  There were even parents who sent in far more exotic things, like seaweed, which I would never in a million years have purchased.  Zax didn't like it, but a lot of the kids did, and they would never have known without snack time.

And last, but most important:

4.  Training.

Partway through Zax's three-year-old year, I realized that snack time was a perfect opportunity to practice asking about the content of food.  I told him to ask whether the snack had "egg or peanut or nut" each and every day.  And I asked the teachers to please always answer the question.  Never to say "You can trust us to always check" or "Nobody will send peanut, the school is peanut free."  Because everybody makes mistakes, and while Zax was getting practice asking this critical question, it also didn't hurt to remind the teachers every day, just in case they forgot to look.

This process was a bit of a wash during Zax's three-year-old year--most of the time he forgot to ask.  But during his pre-K year, Zax really took this responsibility on himself.  After a while, he told me to stop reminding him in the morning, but he (and his teachers) reported that he still remembered to ask every single day.  Now it's an ingrained habit, which serves him well when food comes up in unexpected situations.

Because of the new preschool snack policy, Kal isn't going to get this important practice.  I'm going to have to figure out other situations for him to ask his important question.  We adapted, of course.  We got Kal a special monster snack bag to carry his snack in (it isn't as big as it looks, he's holding it in the foreground.)  And Kal doesn't know the difference, so he doesn't miss being the special "snack kid."

I know I'll come up with a way to teach safety to my second-born, but I still lament the loss of the daily reinforcements at preschool.  It was a safe environment, and the perfect place to practice.

Friday, October 10, 2014

My Story ...part 3

Click here for part 1 of my allergic history, birth to age 4.
Click here for part 2 of my allergic history, up to age 6.

So by age 6, I'd actually been tested for allergies, and my allergies and asthma were coming under better control.

Time went on, and we muddled through.  At some point, the responsibility of carrying of my inhaler and EpiPen (which I now had) was passed on to me.  I remember wearing a fanny pack daily in 5th grade, so that might have been when we transitioned.  I definitely remember keeping the EpiPen in my backpack by high school, and I particularly remember the flimsy plastic case it used to come in being crushed by the weight of all my books.  I wondered whether it was sterile enough for use if it was unprotected in my bag, picking up all the lint and grit that backpacks gather.

The use of my daily asthma meds was relegated to me as well.  I was diligent, until sometime during my teens, when my mother asked if I was still using my inhalers.  “Sometimes” was my answer.  She rebuked me for that, telling me that they have a cumulative effect and using them once in a while wouldn’t do me any good.  If I wasn’t having problems despite not using the medications properly, then maybe we ought to stop using them altogether.  My asthma did seem to have entered a “honeymoon period,” and so we stopped the daily medication.

In fact, I stopped seeing an allergist altogether for a while (and I’d never been tested yearly like my kids are.)  I continued to get EpiPen, albuterol, and daily antihistamine prescriptions from my primary doctor, but I had food avoidance routines down by that point, my asthma only bothered me when I was sick or sometimes exercising, and I never had any questions.  I saw no need for a specialist.

I continued to have the occasional slip-up in the food allergy department into adulthood.  It took a couple emergency trips to the drug store to buy Benadryl before I finally remembered to always keep some with me.  But still, by the time I was on my own I felt confident in my ability to navigate the grocery store, restaurants, parties, and life in general.

One thing I figured out, probably in my teen years (and something that will certainly make some people shudder), was that I could do a “taste test” for foods I was uncertain of.  If there was a food I wanted to eat, but I couldn’t find a label or the person who made it, I would break off the tiniest crumb of the food and place it on the tip of my tongue.  Then I would wait.  If I felt nothing, I would repeat the process with a slightly larger crumb, and again a few times until I’d eaten a whole bite safely.  If I made it that far, I would eat the food, confident that it did not contain any nuts.  No foods that passed this taste test ever gave me trouble in larger doses.

If, on the other hand, I started to feel the telltale tingly itch of an allergic reaction, I would spit out the crumb, rinse out my mouth, wash my hands, and move on.  Generally if this happened, it happened on the first crumb.  And generally, that was as far as it would go.  Although there was once, while I was babysitting, no less, that a taste-test reaction got a little more severe.  The cookie probably had walnuts in it, which has always been my worst nemesis.  But was that enough to stop a teenager from repeating the process?  Of course not.  (Warning to parents:  Allergic teenagers are scary.  The time between taking responsibility for their own care and full maturity can be fraught with bad decisions.  I’d never thought of it that way until recently, but when analyzing my own behavior, I had to admit that some of it was reckless.  In fact, I’d forgotten about the babysitting incident until I sat down to write this post.)

As I did become an adult, there wasn’t much to report.  Every now and then something would slip under my radar, but the incidents were few and far between.  I took charge of buying my own food, but knew how to read labels and fortunately, tree nuts aren’t as common as some other allergens.  In 2002 I introduced a new family to the complexities of food allergies when I met my husband.  As we got engaged and then married, he and his family got to learn more and more about my corner of the world.

I’ve never asked my husband to completely remove nuts from his diet or our house.  What I do expect is that he thoroughly clean up after himself.  And to know when he can and can’t kiss me.  I had to educate him on what all that meant at the beginning, and I give the occasional reminder even now.  Even though he knows what I’m reminding him of, he manages not to sound impatient when he responds to my reminders.  He knows that this makes me nervous.

Having children was an adventure, as it is for everyone, but especially in the food allergy department.  I’ll give my children their own introductions, but I will say that having kids made me reevaluate how I handle my own allergies.  I’d become lax in some areas, but I can’t teach my kids proper safety if I don’t model responsible behavior.  I can’t check their restaurant choices for allergens while assuming a food is free of mine, even when it has been in the past.  After all, you never know when someone is going to do something wacky, like put walnuts in an egg roll.  And I have a responsibility to be there for my kids.

I started seeing an allergist again myself.  I had new questions I’d never before considered, like whether it’s safe to breastfeed after an allergic reaction.  I wasn’t wondering about the drugs so much as whether I might pass anti-walnut antibodies on to my children, thereby giving them my same allergies.  It was a whole new world--a time that causes many people to reevaluate their priorities--and it galvanized me to be safer and to help make the world safer for my children.

Wednesday, October 8, 2014

My Story ...part 2

Click here for part 1 of my allergic history.

By this point, I had made it to 4 years old, and my allergies to tree nuts solidified.

The next few years of my life were a whirlwind learning adventure for my family.  They trained me to ask whether food had nuts in it, and I notoriously even asked that question once when someone offered me a popsicle.  But despite our care, I sometimes still had accidental reactions, and my parents still ran into trouble with doctors not believing them.

“Her throat does look a little raw,” an ER doctor once told them.  “Maybe she has strep.”

“It’s not strep, she ate nuts at the church potluck and says her throat itches.”

“Well, let’s do a strep test anyway.”

Lo and behold, the strep test was negative.  And why should we pay for a strep test when we’re in the emergency room for a very specific, known cause?  ER doctors do have to be detectives, of course, because people don’t always tell the truth about what brings them in (when the reasons are illegal, irresponsible, or embarrassing, for example.)  And I wasn’t visibly swelling up or losing consciousness.  But by today’s standards, I should have been (and probably would have been) treated for anaphylaxis immediately.

Sending me out into the world was difficult, too.  My mom did manage to get my epinephrine into the school nurse’s office, although there was no Food Allergy Action Plan to go with it, and who knew how many people would recognize the signs that it was time to use it?  As frightening as it was for my mom to send me off, I scared my teachers as well.  How were they supposed to deal with this child with a medical condition they’d never encountered before?

I left behind a few traumatized teachers, whenever something happened in class.  My first grade teacher obviously thought she was being accommodating when she broke the class into two groups to make cranberry nut bread for Thanksgiving.  One group would follow the recipe in its entirety, including nuts.  The other group would leave the nuts out.  My mom was against this accommodation, arguing that I needed to learn that I couldn’t always eat what everybody else ate, but the teacher and parent helpers said it was fine, they didn’t want to leave someone out.

The baking of the breads went according to plan, but then the teacher sliced up the nut bread to hand out to everyone else before she sliced my nut-free bread.  Using the same knife and cutting surface.  Cue the alarm bells.  Cue also the teacher who got a crash course in food residue and contamination.  (For decades, my mom would report running into this teacher in the grocery store, and the woman always recognized my mom.  Some experiences burn faces into your memory for good.)

To be honest, I’m not sure we even understood the concept of allergen contamination before that.  My parents might have known about it, but this is a milestone in my memory, when I realized that my food touching someone else’s food could cause a problem.  The world didn’t respect the problem at the time, either.  Certainly, packaged foods seldom bore “may contain” warnings when I was young.  I’m not entirely sure when the transition occurred, because I wasn’t consistently reading the labels until my teen years, but I do remember being surprised at the new warnings that appeared on foods.  Some of them declared that foods I’d been eating for years were dangerous to me, which caused no end of confusion.

Around the time of the first-grade incident, when I was 6 years old, I got a new pediatrician who also specialized in allergy.  That meant I finally got skin testing for my allergies.  They tested for a huge number of items, both food and environmental.  In fact, there were so many items that they had to split the test into two days because my six-year-old back wasn’t big enough.

I hated the tests.  I had to lay on my stomach for what seemed like eternity while my back itched like mad.  My mom encouraged me to scratch my stuffed stegosaurus’s back where I itched.  I was worried about what they would find, and especially worried that they would tell me I was allergic to chocolate.

My test results were surprising, and revealing of how many false positives skin testing can yield.  I had positive results, 4s, in fact, (scale of 0 to 4 that is still used today) to all of the tree nuts, which was entirely expected.  I also had a 4 for peanuts, which I had been happily--and safely--eating since the age of 2.  And I had a bunch of 2s and 3s to all sorts of random foods including peas and beef, all of which I had been safely eating.  I had no reaction to egg by that time.  Or, to my relief, to chocolate.

I’m grateful to my parents for their level-headedness after those tests.  Some parents might have cut all of those foods out of my diet, but mine didn’t.  Why cut out a food I was having no reaction to?  The doctor wanted to perform food challenges on all the foods I had positive results for (other than the nuts) to see if we could provoke a reaction at high doses.  My parents declined those challenges.  If I wasn’t reacting to the normal-sized portions I was getting at home, then what was there to worry about?  The allergist asked, “What if she’s eating at someone else’s house, and they give her a huge portion and make her finish her peas?  Don’t you want to know if there’s a threshold?”  My mom said, “Who does that?”

This doctor also prescribed me with inhalers for my asthma, which made treatment sooo much easier.  He also convinced my mom to start treating my asthma at the start of a cold, rather than waiting for asthma symptoms to occur.  “By the time she starts coughing,” he said, “she’s down to 50% lung capacity.”  And he gave me a daily inhaler, to keep my lungs more stable even when I wasn’t sick.

So my life became a little more stable by 1987-88.  Stay tuned for the final installment on Friday!

Monday, October 6, 2014

My Story ...part 1

When I was 11 months old, I had an anaphylactic reaction to egg.

It happened on the day my mother gave me egg for the first time.  She fed me part of a scrambled egg, but then noticed that I wasn’t right.  I was fussy.  I was breaking out in hives.  She called my pediatrician, who suggested a bath.  She put me in the tub, even got in with me, but I wanted none of it.  I was turning redder and screaming now.  She called the doctor again, who could hear me in the background, and they suggested we go to the emergency room.

Shortly after my mom started driving, I went limp.  My eyes were open, but I was unresponsive.  Panicked, she grabbed at my feet, called my name, and tried to get some sort of reaction from me.  I remained motionless, collapsed in my car seat in the back seat.  My mom desperately tried to wake me up while still driving to the hospital.  Through Boston rush hour.

Right before she arrived, I came out of it on my own.  I wasn’t screaming anymore and was relatively alert, though still bright red.  When she carried me into the emergency room, one of the nurses had the gall to say, “Baby looks okay, Mom looks like she needs a tranquilizer.”  They did treat me, at least, with two shots of epinephrine and a prescription for Benadryl (it wasn’t over-the-counter yet.)  I didn’t receive any oxygen or steroids.  Nobody suggested I get tested for allergies or be seen by an allergist.  Nobody prescribed me an Epi Pen or take-home epinephrine of any kind.  Nobody even agreed with my mom that the egg was responsible.  “It could have been anything she breathed in or ate in the past 24 hours.”  Nevermind that it was the only new food I’d eaten in a week.  Or that the reaction started right after my eating an egg.  (My mom used to be a medical technologist, and worried that two parents with environmental allergies could produce a child with more severe allergies.)  But no, it could have been anything.

I’d been walking for a few months and was steady on my feet, but the epinephrine made me wobble like a drunk while at the same time bouncing off the walls.  At the drug store on the way home, when my mom stopped to get the Benadryl, another woman looked at my beet-red skin and advised, “Oh honey, you shouldn’t leave your baby out in the sun.”  The perfect thing to tell a woman after a day of fearing she would lose her only child followed by not being taken seriously by emergency personnel.

This was 1982, and food allergies were not common, widely known, or widely understood.

Doubt lingered in my mom’s mind because of what the ER doctors had said, but she was still pretty certain the egg had caused the reaction and kept me away from it for the next few years.

My health complications didn’t stop there.  Before I turned 2, I’d been diagnosed with asthma.  (My dad has asthma too, as does his mother.  And one of my sons.)  I had issues with coughing, wheezing, and difficulty breathing, particularly when I was sick--which sometimes seemed to be all the time.  There were no nebulizers back then--at least, none prescribed for at-home use.  My medications were oral liquids, which tasted uniformly horrible.  Treating my asthma became fraught with stress for everyone.  I didn’t want to take the medicine, and sometimes I would throw up after taking it.  My parents were worried that their child couldn’t breathe, and even more worried that they couldn’t effectively treat me.  How much had I thrown up?  Could they give me more, or would I overdose?

The sprinkles weren’t any better.  They would mix the medicine into another food, but the only difference was that I would soon refuse to eat the food.  “Applesauce medicine” is what we used to call one of my asthma medications, and taking it was just as challenging as the liquids.  In fact, the medicine permanently ruined applesauce for me.  Decades later, I will occasionally eat it, but it’s still not a food I will seek out on its own.

Around the time I was 3, my mom realized that I had been eating baked goods with no adverse reactions.  She began to think that I’d outgrown the egg allergy, although I still never ate eggs on their own.  Her relief at the disappearance of that allergy was short-lived, however, as she had new things to worry about.  I’d started to show troubling symptoms every time I came into contact with nuts.  I broke out in hives after helping chop pecans for zucchini bread.  I didn’t “like” the “seeds,” as I called them, and after eating some cookies my grandparents had sent, I said that my tongue itched.  Everything came to a head at a group playdate in May of 1985.  The moms brought food, including walnut muffins.  My mom was wary, but let me have one.

I started screaming.  My mom was scared, and also disappointed at this seeming confirmation of her suspicions and fears.  She packed me up to leave the playdate, but not before noticing the judgmental look on the face of one of the other moms.  “Just tell her she doesn’t have to eat it if she doesn’t like it,” the look seemed to say.  None of them had any experience with food allergy, and so nobody recognized it.

My mom bought me a popsicle to try to reduce the swelling, but otherwise didn’t know what to do.  We didn’t have any Benadryl.  It became over-the-counter sometime that year, but I don’t know if it was available at the time of this incident.

My four-year well child visit was soon after, and my mom mentioned the incident to my pediatrician.  His jaw dropped, and so did my mom’s stomach.  “That’s anaphylaxis,” he told her.  “She could have died.”  “Shit,” my mom thought.  And finally, somebody prescribed me epinephrine.

EpiPens weren’t widely available yet, so what I first received was an AnaKit.  It was a traditional syringe, preloaded with two doses of epinephrine.  You’d push the plunger until it stopped for the first dose, then rotate it, and then you could administer the second dose.

This takes us to about 1985.  More to come on Wednesday!