Anaphylaxis: just a sip away for one doctor’s son

As an allergist, I’m not the first person you’d expect would almost lose a child to a severe allergic reaction — but that’s exactly what recently happened to my family.

My son, Graham, was diagnosed with milk allergy at 5 months of age, after we noticed that he had skin reactions to breast milk after I’d consumed large quantities of dairy. After his diagnosis, he had two accidental exposures to milk at his daycare. The first was to baked milk in a meatball, and the second was after milk came into contact with his skin when he grabbed another kid’s sippy cup. Both resulted in mild hives, but nothing that couldn’t be controlled with Benadryl.

Still, we kept him in daycare and developed a plan to protect him. He would be separated from other kids at mealtime, and someone was supposed to sit with him during the passing out of food and clean-up.

On the Friday we almost lost him, our plan went wrong. There were only five kids in the class that day, so instead of the normal two teachers, only one teacher was present during mealtime. It happened quickly: while the teacher had her head turned during clean-up, a child handed his sippy cup to Graham, who proceeded to take a few sips.

I was in clinic seeing patients when I got a text from another teacher: “I had to give Graham his EpiPen.”

Alarmed, I called her back and she told me Graham had a mild rash but mainly his breathing was affected. I quickly FaceTimed her so I could see him. On video, I heard the grating noise in his windpipe we call stridor and saw that he was working hard to breathe. I realized this was much more serious than I’d initially thought.

“Give him the second EpiPen and CALL 911!” I said and then quickly left work to meet my son in the ER.

I was forty-five minutes away. I have never felt so helpless in my life. I called my husband, a pediatric pulmonologist, and told him to hurry up and get to the daycare. I called my son’s allergist to make sure I’d not missed anything. While I was driving, my husband was on the phone with me from the back of the ambulance. He had asked EMS to give back-to-back Albuterol treatments. These, coupled with the two EpiPens administered at daycare, stabilized our son — but not for long.

I walked into the ED just in time to see Graham sit upright in my husband’s lap, spit out his pacifier, and start coughing and barking. His face turned beet red then purple as he gasped for air. He vomited.

“He needs more Epi!” I said. The resident ordered Epi. It seemed to take forever. “WHERE IS THE EPI?” I asked my husband.

Soon, Graham got the Epi, along with other medications designed to reduce the allergic reaction and minimize his dangerous symptoms. We were then told my son needed to go to the pediatric intensive care unit on a continuous IV epinephrine drip. They said he might need a central line inserted into his arm or chest to administer more meds.

How was this happening? It was just a sip of milk!

Graham rebounded again to a milder degree while on the Epi drip, so the rate was increased.  He also received nebulized epinephrine and a bronchodilator to expand his airways and help him get oxygen. When we got to the intensive care unit, his blood pressure and heart rate were through the roof. He was given still more medications to help stabilize him.

Over the course of the day, Graham was slowly able to be weaned off the medications and we somehow avoided intubation and a central line. We spent the night in the PICU and were discharged home the next day, thankfully, still as a family of four.

While our story had a happy ending, there’s an important lesson in this for all parents of children with severe allergies. In part, due to the rapid increase in the cost of the EpiPen, people are splitting up their twin packs. Please do not do this! That second EpiPen can be the difference between life and death — I believe it was for us.

Call EMS after the first EpiPen dose is administered and if the first one doesn’t work after five minutes, give the second. If you have an allergic child, make sure everyone who is caring for your child is properly trained on how to use the injectable epinephrine device. You should NOT fear the EpiPen. During a severe allergic reaction like my son had, Benadryl does not save lives. Epinephrine does.