One afternoon, I am eating a slice of gluten-free sandwich bread with peanut butter. My 21 month old toddler cuddles up to me, asking for a piece. My husband nudges me, “Let him have a few bites, he still has time before dinner. Hasn’t he eaten peanut butter before?” I reply: “Well, not more than 1 or 2 times. He may have tried apple slices with peanut peanut once before.”
About 15 minutes after ingestion of 3 pieces of my peanut butter sandwich, my toddler starts scratching his eyes and having a runny nose with clear thin mucus. I wipe his nose with a clean tissue and examine his face. He appears a bit uneasy, but no obvious hives on his body or face, no puffy lips, and no wheezing that I could hear obviously. He however keeps scratching his arms and eyes. I quickly text our pediatrician who instructs me to give him Benadryl 2.2 cc and watch him. I do just that.
An hour after ingestion, both parents are looking at the baby, asking each other, “Do you think he looks okay?”. He continues scratching himself and seems quieter and less playful than usual. He starts sitting on me or lying on the floor. “I don’t like this,” I say, based on his behavior. We decide that I’m going to take him to the pediatrician’s office (their father can stay at home with his brother). I change into going out clothes. Ten minutes later, my baby is lying on his side drooling and looking miserable, with more clear mucus from his nose. I quickly suction his nose with Baby-Vac (connected to a vacuum) and get large amounts of thin clear mucus. I grab the diaper bag and carry him (in home clothes) out of the apartment, down the elevator. On the way to the parking garage which is 2 blocks away (typical Manhattan), I listen to his breathing, which is swallower, and to his heartbeat, which I can tell is faster. I strap him into the car seat and text a friend at the hospital I work at. My friend is running the operating room that day and will send a pediatric anesthesiologist to meet me in the pediatric ER there (in case of airway issues and to place an IV, if needed). I start driving a few blocks, peeking at my baby via the mirror. Suddenly, I notice the change: His eyes are now swollen shut, he is drooling a lot, he is turning dusky, and he is slumped over. I immediately turn around, no longer heading to my work hospital which is 20 minutes away, I opt for a closer hospital (which I know does not have a pediatric ER) 6 blocks away. (I let my friend know that I’m heading to a closer ER.)
I pull up to the valet parking and grab a now unconscious baby with labored breaths and run into the ER check-in area. “Please sit down and fill out these forms,” a clerk tells me handing me a clipboard. I say no and explain, “My baby is not breathing properly, I think he had a severe allergic reaction.” The clerk glances at us and repeats that I fill out the paperwork first before being seen. He says: “Your baby is sleeping peacefully. Please fill out the paperwork and give it back to me.” I insist that he gets a nurse or doctor. He starts arguing with me. I hand him my medical insurance card and explain that I am a physician and that I need help urgently. I quickly text a friend who works at this hospital and asks if she is around. This time I show him my baby and repeat my request for a nurse to triage him; I am about to get angry. Perhaps hearing my pleas, a nurse sticks her head out of a small room (triage room) down the hallway and waves me in.
She puts a pulse oximetry on a baby finger (too loose), so I move it to a thumb (thicker, more like an adult finger) and places a pediatic blood pressure cuff on the arm. Vital signs read oxygen saturation at 86%, HR 186, BP 50/32. My baby is in shock and his oxygenation is dropping. She immediately picks up the phone and says, “Bring the pediatric crash cart to room 6. Overhead page Dr. ____ now. And page anesthesiology stat to the ER.” She shoves me out and points, “Hurry there into room 6 and your baby will be seen immediately by the ER doctor”.
An ER attending is waiting in the room and asks me if any allergies, I said none that we know of. He instructs me to quickly expose his thigh, asks how old and how much he weighs, then swabs my baby’s thigh with alcohol and cracks the epi pen and injects the first dose of epinephrine. The ER attending and the nurse put on a face mask for oxygen, EKG cables, a blood pressure cuff (I am holding the baby, sitting on a stretcher). An anesthesiologist then shows up and asks how the airway is. We all look at the monitor, saturation is 92% with supplemental oxygen. The ER attending and the anesthesiology attending listen to my baby’s breathing with their stethescopes agreeing, “He is moving air, the wheezing is mild”. So he doesn’t need to be intubated at this moment. His face is now unrecognizable with the eyes and lips swollen. The ER doctor gives another shot of epinephrine (pediatric dose 0.15 mg). The HR from 180s-200s drops to 160s after the second shot of epinephrine and BP is better, at 76/44. He instructs the nurse to place an IV and give a dose of IV steroids. After the second dose of epinephrine, his facial swelling lessens and his oxygenation improves to 95% (still with a face mask on). They give him an albuterol nebulizer treatment. My baby seems less uncomfortable and his breathing more even.
My anesthesiologist friend happens to be at work that day, so she visits me and examines my baby and keeps me company for about 20 minutes. I now calmly fill out the admission paperwork on the clipboard then turn it in, not bothering to talk much to that clerk.
Six hours later, I am still at the ER. Several ER residents visit me to examine a pediatric case of anaphylaxis. Another ER attending takes over (shift changed) and comes to say hi, explaining that they had to keep my baby on observation here, “because of a biphasic reaction.” They worry that if they had discharged me, there would have been a second, delayed allergic reaction, that could be worse. I ask if the worst has past. He says yes, and that he sees these allergy cases with small kids often (and adds that his wife is an allergist who works in Long Island). He explains that in this instance, multiple organ systems were involved: hives (dermatological), wheezing (respiratory), swollen eyes and lips (angioedema), tachycardia and hypotension (cardiovascular), change in alertness/mental status (neuro). We chat and I ask him if I could leave (my only break was to the restroom, when we put him in a crib while a nurse watched him). I tell him that I am a physician and promise that I will sleep next to him and watch him very carefully. He explains that they usually keep these cases a few hours longer, but would discharge me on one condition: That I first go to a pharmacy to pick up 2 epinephrine pens, so I would have the epi pens with me when I am home tonight. And if I somehow cannot obtain epi pens, to return to this ER where he would admit us again. I agree. I text my husband the update.
After signing out the discharge paperwork (the ER staff had electronically sent the prescription to the nearest pharmacy), I carry my sleeping baby out. His pulse is now in the 90s (completely normal) and his eyes are less swollen. We walk to the pharmacy (Manhattan can be so convenient) and I pay for 2 epi pens ($350) with my HSA card. The pharmacist tells me that epi pens are stored at room temperature (not in the fridge!). Then I walk to pick up my car at the valet, but as it is early in the morning, the valet service is closed. I read the sign that has directions to a garage a few blocks away. In the cold, I shiver and carry my baby and purse in the direction of the parking garage. I find it and pay ($32 total). I put my baby in the car seat and drive home. After changing his clothes and wiping his face with a warm wet towel, I take a shower and sleep with him on my chest all night.
The following day, I make multiple calls to make an appointment with an allergist. Noone can see me in the same week. Many allergists do not have a pediatric background. Some adult allergists will see a kid less than 2 years old, some won’t. (I still prefer a pediatrician specializing in allergy and immunology.) I ask my friends and pediatrician for referrals. Finally I was able to make 2 appointments with 2 different pediatric allergists. I keep both appointments, one appointment 10 days from now, another 14 days from now. At home, I throw out all peanut products (just in case) and I pick up more epi pen prescriptions (from my pediatrician who saw my baby the following day). My husband and I practice the epi pen training pens and pack a set of epi pens in the stroller and a set in the kitchen.
At the first allergist, I made an appointment for both babies. In the room, she tells me only the one who had the allergic reaction needs to be seen. She does a skin allergy test with only peanut and before the 15 minutes is up, we already notice a huge wheal (more than double the control wheal). The other baby lifts his shirt gesturing that he also would like the skin test, she says no need. She sends an electronic prescription to my selected pharmacy for Auvi-Q and hands me a prescription for peanut allergy labs. Her office doesn’t draw any labs.
In the rain, I go to a nearby lab, having called before to inquire if they did pediatric lab draws, even for a strong 21 month old baby. The lab reassures me that they do. We arrive at the lab and after waiting a while, are called in. The phlebotomist has me sit in the chair and hold the baby, while she looks for a vein. The first stab the baby wails and withdraws his arm. She tells him to stay still. The second stab she gets a flash of red, but he moves again. The third stab the same thing happens, and she is now yelling at the baby to not move. I stop her from a fourth stab and tell her that I am a doctor and will do the stick, but she has to help hold the baby and prepare to put the tube into vacuum of the tubing. I get the 23 G butterfly needle and hit a vein in the hand and blood is flowing back. The tube starts filling up, but she lets go of the baby and then his arm moves and the needle is out. There isn’t enough blood in the tube for the test. She insists we do it again. The baby is crying hysterically. I put on gauze with tape and tell her no more sticks. She gets upset and starts saying that I don’t know how to hold a baby and she draws blood from babies all the time, even babies that are 4 months old. I tell her that 4 months old babies don’t kick or move as strongly as a 21 month old. Her supervisor tries to convince me to stay, but I ask them to cancel the order and leave.
At home, I read forums online about pediatric blood draws and ask a few friends. I decide that I will go to a pediatric outpatient lab. Most childrens’ hospitals have pediatric outpatient labs, such as NYU and Cornell.
To give my baby a breather, I first take him and his brother to the second allergist appointment a few days later. This allergy office has a food clinic and this allergist also practices general pediatrics. She has 2 sons under 5 years old herself, so chats away about daycare and her 3 year old son’s behavior. I listen to her parenting tricks. Unlike the other allergist, she prefers to test both kids. She explains that as a mum with 2 sons who look alike and close in age, she recommends this. She always recommends to parents with twins or siblings close in age to not only test both kids for allergies, but to tell the school or daycare that both kids have the same allergies. “How can they remember who is allergic to peanut and who is not? What happens if they mix up the kids? Not worth it,” she says. She writes up a lab form with many allergens listed. “If you are drawing blood from a baby anyway, we might as well be comprehensive, no point of going back again,” she tells me, then explains how there are cross-reactivities across tree nuts and legumes (peanut family). She also gives me a phone number of a pediatric lab.
A few days later, I bring both babies to a pediatric outpatient lab. All the other patients are less than 4 years old. The phlebotomist has light up toys ready and she and her assistant hold down my first baby together and in 1 stick, fills up several tubes of blood for allergy panels. My second baby doesn’t even cry with his 1 stick, too focused on a light up caterpillar. Both babies get a squeeze toy panda in a plastic bag on the way out.
The results are back: Baby One (that went to the ER) has elevated IgE antibodies to peanut and peanut component test was Ara H2 positive (negative for Ara H 1, 3, 8, 9). Baby Two (his brother) has elevated IgE antibodies to pistachio, pecan, cashew, and walnut (but negative IgE to peanut). At my follow up appointment with the second allergist, she does a series of skin tests on Baby Two. All 4 skin pricks were positive for the same 4 positive blood tests for those 4 tree nuts. They can both eat almond and hazelnuts (and many other nuts and legumes on her tested list). She warns me that based on the labs, they likely will not outgrow the allergies, but we can test them yearly to check. She gives me instructions in recognizing reactions and tells me to also have Zyrtec 10 mg (dissolvable tabs) ready in addition to Benadryl and epi pens.
Once home, I read all food ingredient labels in our cupboards (looking for lupin which is the same family as peanut – found in many gluten-free pasta) and order nut-free snacks Sunbutter, Annie’s bunny snacks, Cherrybrook baking mixes, and Homefree cookies.
Interesting tidbit: Girl Scout cookies are supplied by 2 cookie manufacturers, depending on the region (the Girl Scout council decides from which manufacterer). My colleague’s daughter (who is a Girl Scout) has a peanut allergy and her favorite flavor is the Samoas. The other day they noticed on the box that the same cookie box called Caramel Delights from ABC bakers are not peanut-free, but Samoas from Little Brownie Bakers are peanut-free. My colleague looked it up online and verified this. A detailed blog on her daughter’s peanut clinical trial also discusses girl scout cookie manufacturer’s differences in regards to peanut and tree nut allergies.