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!