“Our 1-year-old daughter, Brynlee, suffers from life-threatening food allergies to milk, peanuts, and tree-nuts. She has had anaphylaxis 5 times.
Around 4 months old, we noticed she had a ‘rash’ that would come and go, along with uncontrollable itching. We took her to multiple pediatricians, a children’s urgent care, and an ER. Every time, we were practically laughed at for being frantic over ‘just eczema’. We were told to change our laundry soap and use extra lotion. I finally had enough of the runaround and demanded an allergy test. Her pediatrician reluctantly agreed. It came back positive for milk, peanuts, and hazelnuts. She was reacting to these foods from being passed through my breast milk. The pediatrician wasn’t concerned, didn’t offer an epi-pen, and told us, ‘You just need to avoid those foods and give Benadryl to help with itching.’ That wasn’t good enough for me.
I knew about food allergies but had never had first-hand experience with anyone who had hives or a history of anaphylaxis. I called Rady Children’s Hospital and got an urgent referral to an allergist. I truly believe our allergist, Dr. Susan Laubach, is the only reason our daughter is still alive today. She did skin prick testing to confirm the allergies, offered tons of advice, created an anaphylaxis plan, and prescribed us Auvi-Q epinephrine auto-injectors. I left her 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.’
Boy, was I in for a huge surprise. Every label I picked up to read 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! We went to the grocery store and I selfishly cried, ‘Now what! What am I going to eat? Maybe we should just put her on formula.’ Oh wait, we couldn’t just put her on formula…hello! milk allergy! We feared how we would get rid of milk in our home. Our 3 year old son LOVES string cheese, pizza, mac ‘n cheese, Cheetos, Goldfish, chocolate milk, you name it.
As time went on, it did not get easier, it just became more manageable. It became second nature to read a food label. We quickly learned that hand sanitizer in public wouldn’t remove the allergen we may have come in contact with. Hand washing is most effective, but a wipe would do.
Life Threatening Flare-Ups
We scheduled an oral-food challenge in the allergists office to determine if she really had peanut allergy since we had conflicting results with the blood and skin tests. She did great and was monitored for three hours. I went back to pick our son up at my parent’s house and Brynlee started sneezing. Then a few hives appeared. Then her nose started running… and next thing we knew, she was blue in my mom’s arms. I shouted, ‘Call 911! I’m grabbing the epi!’
My dad administered the epi and I called 911. 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.
The next few weeks, we felt like we were living in a bubble. We were afraid to go anywhere. I could not deal with seeing my daughter like that again. We needed stuff, so we went to Target, got home, and she wasn’t acting normal. I decided to put her back in the car and take her to the ER. 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, since there was no shoulder, praying that she was not going to die. My sister met me at the gas station off the exit and I pulled Brynlee out of her car seat, while 911 instructed me to administer the epi, since she had a history of anaphylaxis. 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.
We had her check-up and shots a few weeks later. Everything was fine until three hours after we had gotten home, she broke out in hives, was screaming, and was 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.
We reluctantly went on a Disney Cruise that had been booked for a year. Besides the constant fear of anaphylaxis in another country or in the middle of the ocean, we had a great time. A few minutes before we landed home, I noticed the man in front of us was eating peanut butter Chex Mix. We had pre-boarded the plane to sanitize and sat in the very last row of the plane to have minimal exposure to anyone or food. While we were landing, our 3-year-old spilled soda on my husbands lap. While we waited for everyone in front of us to get off the plane, I stepped in the aisle so my husband could go out and clean up in the restroom. 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. The steroids she was given made her irritable and fussy for several days.
As a stay-at-home mom, I crave getting out of the house. I spent weeks researching safe places to go, since the park was filled with kids eating Goldfish, babies drinking milk, etc. I found a play place that catered to families with nut allergies. I worked up the courage to take our kids there and it was so neat. 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 in one of the exhibits. I could have died right then. I notified the employee and he told the little girl’s mom, ‘This is a nut-free facility and she cannot eat while walking around.’ The mom said, ‘Well, what’s the problem????’ 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.
The hardest part is that people do not recognize a milk allergy like they do peanut allergies. Milk is just as life-threatening to some people as peanuts. Unlike lactose intolerance, milk allergies are not a digestive issue. They affect your immune system. Milk is in everything and often hidden. I fear for the day that our daughter has to go to school and avoid social events, because everything is based around food. We have very few friends, avoid social events, can’t eat out due to the risk of cross-contact, fear traveling or going in public, and live every day stressed and on our toes ready to save our daughter’s life with epinephrine. Wherever Brynlee goes, her medical kit does too. We have to ask people not to touch her in public, she can’t ride in a shopping cart, we don’t go to parks or play places since we can’t take the risk unknowingly exposing her to her allergens. Even skin contact with milk causes all-over body hives.
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. We need more awareness. Eat before you go to the park. Don’t let your child drink a bottle of milk or open that bag or goldfish in the store. Wash your hands and don’t touch someone else’s child. You wouldn’t know by looking at her, that she suffers tremendously from life-threatening food allergies.
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. My daughter deserves it. The 32 million Americans, including 5.6 million who also suffer from food allergies children deserve it.
I am so thankful I fought and advocated for my child. Who knows where we would be today if I hadn’t stuck to my mom instinct!”
This story was submitted to Love What Matters by Jenn Lundy-Niles of Southern California. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more amazing stories of kids living with food allergies here:
‘We nearly lost him today. I pulled off wrappers, started dishing them out. I gave it to him.’: Mom feels guilt for giving son Popsicle that ignited peanut allergy, ‘We’re just trying to keep our kid alive’
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