‘Dial 911!’ ‘Pick up the Epi!’ Her lips were blue, and she was ghostly white.’ Mom recalls stressful instances when her kid has an allergic response to foods and insists that “she deserves to not feel like a burden.”

“Brynlee, our one-year-old daughter, has life-threatening food allergies to milk, peanuts, and tree nuts. She has experienced anaphylaxis five times.

Courtesy of Jenn Lundy-Niles

We noticed she had a rash that came and went and excessive itching when she was about four months old. We took her to many paediatricians, a children’s urgent care centre, and the emergency room. Every time, we were virtually mocked for being so concerned over ‘just eczema.’ We were advised to switch our washing soap and apply more lotion. I’d had enough of being lied to and ordered an allergy test. Her paediatrician agreed, if grudgingly. Milk, peanuts, and hazelnuts all tested positive. These foods had been transferred through my breastfeeding, and she was reacting to them. ‘You just need to avoid those meals and use Benadryl to help with itching,’ the paediatrician said, without offering an epi-pen. That was insufficient for me.

I was aware of food allergies but had never worked with anyone who had hives or an anaphylaxis history. When I called Rady Children’s Hospital, they immediately referred me to an allergist. In my opinion, Dr Susan Laubach, our allergist, is the only reason our daughter is still alive today. She confirmed our allergies with skin prick testing, gave us plenty of information, devised an anaphylaxis plan, and prescribed Audi-Q epinephrine auto-injectors. I walked out of her office wondering… ‘Ehh. It will be simple to avoid milk. I don’t even liI wouldn’t say I like not a big fan of cheese unless it’s on a random slice of pizza. Peanuts, on the other hand, we won’t eat.’

Courtesy of Jenn Lundy-Niles

I was in for a rude awakening. ‘Milk’ was written on every label I picked up to read. Besides milk, yoghurt, cheese, and butter, I discovered milk in lunch meat, bread, canned soups, chips, crackers, cookies, salad dressing, and even ‘I can’t believe it’s not butter! ‘Now what!’ I wailed bitterly as we went to the food store. I’m not sure what I’m going to eat. ‘Perhaps we should just put her on a bottle of formula.’ We couldn’t just put her on formula, could we? Milk intolerance! WMilkrewas were concerned about getting rid of the milk in our house. String cheese, pizza, mac ‘n cheese, Cheetos, Goldfish, chocolate milk, you name it, our 3-year-old son adores it.

It did not get easier with time; instead, it became more manageable. Reading a food label has become second nature to me. We rapidly discovered that using hand sanitiser in public would not eradicate any allergens we may have encountered. Hand washing is the most effective method, but a wipe will suffice.

We planned an oral food challenge at the allergist’s office to see if she had a confirmed peanut allergy after the blood and skin tests came back with mixed results. She performed admirably and was observed for three hours. Brynlee began sneezing as I returned to my parents’ place to pick up our son. Then a swarm of bees emerged. Then her nose began to run… She was blue in my mother’s arms before we realised it. ‘Call 911!’ I yelled. ‘I’m going to get the epi!’

My father gave me the epidural, and I dialled 911. Her lips were blue, her heart was beating due to the adrenaline, and she was ghostly white. ‘If you had delayed or waited any longer to give her the epinephrine, she would not have survived,’ the ER doctor said. Due to the possibility of biphasic anaphylaxis, she was taken to the hospital for intensive supervision.

Courtesy of Jenn Lundy-Niles

We felt like we were living in a bubble for the next two weeks. We were terrified to leave the house. I couldn’t bear seeing my daughter in that state again. We needed something, so we went to Target. When we arrived home, she wasn’t acting like herself. I decided to return her to the car and drive her to the emergency room. When I looked in the mirror while going, I noticed that her lips were blue, and she was attempting to cry but couldn’t get the air out. Because there was no shoulder, I was on the phone with 911 and speeding to the nearest exit with my hazard lights on, praying that she wouldn’t die. My sister met me at the exit gas station, and I yanked Brynlee from her car seat as 911 told me to administer the epidural because she had a history of anaphylaxis. We were transported by ambulance and kept under observation for four hours. The riddle of what we encountered in the shopping cart remains a mystery.

Courtesy of Jenn Lundy-Niles

A few weeks later, we had her check-up and immunisations. Everything was good until she broke out in hives, screamed, and became pale three hours after we arrived home. I gave epidural and dialled 911. Although some DTAP vaccinations are cured in milk protein, hers was not. This remains a puzzle. That’s the terrifying aspect.

We went on a Disney Cruise that had been arranged for a year with trepidation. We had a lovely holiday, despite the constant concern of anaphylaxis in another country or the middle of the ocean. I spotted the man in front of us eating peanut butter Chex Mix a few minutes before we reached home. We pre-boarded the plane to sanitise and sat in the plane’s very last row to avoid contact with anyone or food. Our three-year-old spilt drink on my husband’s lap as we were landing. While we waited for the passengers in front of us to disembark, I walked into the aisle to allow my husband to clean up in the restroom. The man-eating the peanut butter Chex Mix stretched out and touched Brynlee with his hand. She stuck her hand in her mouth right away. I immediately gave her Benadryl. She had hives all over her face when we went to fetch our luggage. I noticed her eyes and lips were swollen as we stepped outside. I gave epidural and dialled 911. We were transported by ambulance and re-examined for four hours. The steroids she was given for several days made her unpleasant and fussy.

Courtesy of Jenn Lundy-Niles

I miss going out of the house as a stay-at-home mom. Since the park was full of kids eating Goldfish and newborns drinking milk, I spent weeks researching safe locations to visit. I discovered a play area for families with nut allergies. I summoned the confidence to take our children there, and it was fantastic. ‘Nut-Free facility’ signs were posted all over the place. There was a separate area set aside for lunch. It was very magical until I saw a small girl approaching us in one of the exhibits while eating a JIF peanut butter bar. I was on the verge of passing out. ‘This is a nut-free environment, and she cannot eat while going around,’ the employee informed the small girl’s mother. ‘Well, what’s the problem????’ replied the mother. Brynlee had started coming out in hives, so we went to the other side of the complex. We departed after I gave her Benadryl. The packs broke through the Benadryl after around 3 hours, and she began vomiting. She was brought by ambulance and monitored in the Emergency Room after administering epi.

The most challenging element is that milk allergies are not as well-known as peanut allergies. For some folks, milk is just as dangerous as peanuts. Milk allergies, unlike lactose intolerance, are not a digestive problem. They have an impact on your immune system. Milk is everywhere, yet it’s often concealed. I dread when our daughter must attend school and shun social gatherings since everything revolves around food. We have few friends, avoid social events, can’t eat out because of the potential of cross-contact, are terrified of travelling or going out in public, and spend every day nervous and on edge, ready to use epinephrine to save our daughter’s life. Brynlee’s medicine kit travels with her wherever she goes. We have to ask people not to touch her in public, she can’t ride in a shopping cart, and we don’t go to parks or play areas because we can’t risk exposing her to her allergens unintentionally. When you contact milk on your skin, you’ll break out in hives all over your body.

Courtesy of Jenn Lundy-Niles

Every day is a challenge, but we persevere. We have no choice. She isn’t a burden, and she deserves to be treated as such. More awareness is required. It would help if you ate something before going to the park. Allowing your youngster to sip a bottle of milk or open a bag of Goldfish from the shop is not a good idea. Hands must be washed before touching another person’s child. From her appearance, you’d never guess that she suffers from life-threatening food allergies.

Courtesy of Jenn Lundy-Niles

Anaphylaxis does not always result in movies’ blue and dramatic reactions. It’s been silent every time. I’m always afraid she’ll have anaphylaxis at night, while she’s sleeping, or while she’s rear-facing in her car seat. I hope that food allergies will become more well-known in the future. My daughter is deserving. It is due to the 32 million Americans who suffer from food allergies, including 5.6 million children.

I’m so glad I stood up for my child and battled for him. Who knows where we’d be today if I hadn’t followed my mother’s advice!”

Courtesy of Jenn Lundy-Niles

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