Little Brynlee is just one year old but she’s already been rushed to the ER five times for severe anaphylaxis. She has life-threatening food allergies to milk, peanuts, and treenuts.
Even the slightest contact with these foods can result in Brynlee turning blue and being unable to breathe.
Brynlee’s mum, Jenn shares what life is like for Brynlee and how even being in the same vicinity of one of these items can lead to a terrifying trip to the ER.
More than ‘just eczema’
As Jenn writes on Love What Matters, she first started to notice a rash plus uncontrollable itching that would come and go on Brynlee when she was about four months.
Jenn took her to multiple doctors, children’s urgent care, and an ER only to be told it was “just eczema”.
However, she then demanded an allergy test and made an appointment with an allergist. The test confirmed that Brynlee had a peanut, hazelnut and milk allergy. She was breastfed and was reacting to these foods being passed through the breastmilk.
I knew about food allergies but had never had first-hand experience with anyone who had hives or a history of anaphylaxis,” Jenn shares.
I left [the allergist’s] office thinking… “‘Ehh. Milk will be easy to avoid. I don’t even like to drink milk and don’t care for cheese other than a random slice of pizza. Peanuts… Well, we just won’t eat them”.”
Soon Jenn discovered that pretty much every label she picked up said ‘milk’.
Besides the obvious, milk, yogurt, cheese, and butter, I found milk in lunch meat, bread, canned soups, chips, crackers, cookies, salad dressing, even ‘I can’t believe it’s not butter’ has milk in it!
As time went on, it did not get easier, it just became more manageable. It became second nature to read a food label.”
‘Blue in my mum’s arms’
When it was time to move to solids, Bynlee went through an oral-food challenge. She was monitored for three hours and seemed to be fine. However, she then started to sneeze. Followed by a few hives. Then her nose started running.
The next thing we knew, she was blue in my mum’s arms.
Her lips were blue, her heart was racing from the epinephrine, and she was white as a ghost. The ER doctor told me, ‘If you would have hesitated or waited any longer to give her the epinephrine, she likely would not have survived.’
She was admitted to the hospital for close observation, due to the risk of biphasic anaphylaxis.”
This was just the first time. It wouldn’t be the last.
‘What we came in contact with on the shopping cart is still unknown’
For the next few weeks, Jenn and Brynlee lived in a bubble, afraid to go anywhere.
I could not deal with seeing my daughter like that again.”
However, one day they ventured out to Target together. She placed Brynlee in the shopping trolley and off they went. When they arrived home, Brynlee wasn’t herself so she headed to the ER just to be safe.
While I was driving, I looked in the mirror, and saw that her lips were blue and she was trying to cry, but couldn’t get the air out. I was on the phone with 911, speeding to the nearest exit with my hazard lights on, praying that she was not going to die.
I pulled Brynlee out of her car seat, while 911 instructed me to administer the epi.
We were taken by ambulance and observed for 4 hours. The mystery of what we came in contact with on the shopping cart, is still unknown.”
Reaction after vaccination
A few weeks later, after Brynlee received her vaccinations, it happened again. Three hours after they returned home from the check-up, Brynlee broke out in hives, and was screaming and pale.
I administered epi and called 911. While some DTAP vaccines are cured in milk-protein, her specific dose was not. This is still a mystery. That’s the scariest part.”
The fear that comes with life-threatening allergies is something no one can understand unless they have been through it.
Jenn became increasingly aware of what people were eating and avoided most parks and playgrounds where children may be eating snacks or drinking milk.
I spent weeks researching safe places to go and I found a play place that catered to families with nut allergies. I worked up the courage to take our kids there.
There were signs everywhere stating ‘Nut-Free facility’. There was a designated lunch area. It was truly dreamy, until I watched a little girl approach us while eating a JIF peanut butter bar.
I could have died right then.
We went to the opposite side of the facility, but Brynlee had begun breaking out in hives. I gave her Benadryl and we left.
About 3 hours later, the hives broke through the Benadryl and then she started vomiting. I administered epi and again, she was transported by ambulance and monitored in the Emergency Room.”
‘Eyes and lips were swelling’
But perhaps the scariest episode occurred while flying home from a Disney Cruise Jenn had booked well before she knew about Byrnlee’s allergies.
Besides the constant fear of anaphylaxis in another country or in the middle of the ocean, they had a great time.
We had pre-boarded the plane to sanitise and sat in the very last row of the plane to have minimal exposure to anyone or food. A few minutes before we landed home, I noticed the man in front of us was eating peanut butter Chex Mix.
The man who was eating the peanut butter Chex Mix reached his hand out and touched Brynlee. She instantly put her hand in her mouth. I gave her Benadryl immediately.
By the time we went to get our luggage, she had hives all over her face. When we walked outside, I noticed her eyes and lips were swelling. I administered epi and called 911. We were taken by ambulance and observed again, for 4 hours. “
‘Wherever Brynlee goes, her medical kit does too’
Five trips to the ER in less than a year due to severe allergies. And not just because she accidentally consumed a treat with nuts in it or had a drop of milk. Simply because she came into contact with someone who had eaten nuts or milk, or came into contact with something that someone had once touched after eating nuts or milk.
This is the scariest thing about severe allergies. Jenn, like every parent with a child with allergies, lives on her toes, ready to save her daughter’s life with epinephrine. They avoid social events, cannot eat out due to the risk of cross-contact and must avoid contact with people, shopping carts, parks and most play spaces.
We can’t take the risk of unknowingly exposing her to her allergens. Every day is a struggle, but we get through it. We have to. She deserves to not feel like a burden, because she isn’t.
Anaphylaxis isn’t always turning blue and dramatic like you see in movies.
Every time, it has been silent. I live in a constant fear that she is going to have anaphylaxis at night, while she is asleep, or while rear-facing in her car seat. I pray that someday there is more awareness for food allergies.
Eat before you go to the park. Don’t let your child drink a bottle of milk or open that bag or goldfish [popular cheesy snacks sold in America] in the store. Wash your hands and don’t touch someone else’s child.”
Food allergies statistics
In America, where Brynlee lives, there are 32 million Americans, including 5.6 million children who also suffer from food allergies.
In Australia, there are an estimated 800,000 Australians with a diagnosed food allergy, and many more undiagnosed. In fact, Australia has the highest incidence of food allergy in the world (per capita) with food allergies affecting 1 in 10 infants and about 2 in 100 adults.
To learn more about food allergies, visit www.allergyfacts.org.au
What to read next
- Food Allergies? You Can Now Have a Donut Cake and Eat it Too!
- When Your Kid Has Life-Threatening Food Allergies
- Can My Baby Eat That? When to Introduce Baby to Common Foods