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By the time my older daughter was 13-months-old, I had been making homemade baby food and introducing new foods for quite some time.
While I usually had hummus in the refrigerator, I never thought to give it to her. So one day, I decided that if she liked it, I’d make my own homemade version for her.
Within 30 minutes of feeding her a spoonful however, her entire body was covered in hives.
It was a hot spring day and my husband thought maybe she was overheated, especially because she was crawling around and seemed fine and she had no breathing difficulties or any other symptoms.
I knew something wasn’t right however, so I put a call into the pediatrician and after they asked me a few questions, they said she most likely had a reaction to food.
We found an allergist and testing confirmed my daughter was allergic to sesame and certain types of tree nuts.
Virtually overnight, we were thrust into the world of food allergies, and everything that comes along with it: skin tests, blood tests, care plans, Benadryl, epinephrine, asking questions, reading labels, and plenty of conversations with family members, teachers, camp counselors and caretakers.
LIFE TRYING TO AVOID A SEVERE REACTION TO FOOD
When my daughter was younger, it was much easier to handle her food allergies because she ate at home most of the time and when she didn’t, I usually brought food for her.
Once school started and there were birthday parties, playdates, sports and activities however, managing them became much more difficult.
Through the years, she had a handful of accidental exposures—some at school, some at home, some with family.
Every time, she only had hives and a dose of Benadryl took care of it immediately.
Last year, I had read about children who no longer had food allergies after taking high doses of antioxidants and probiotics so after talking to our naturopath, she put my daughter on the same type of protocol.
Then earlier this year, her allergist ran a blood panel and said we could do a sesame challenge in the office.
Whether it was a result of the supplements or not (our allergist said there’s no clinical evidence to support it), she successfully passed the challenge.
If you have a child with a sesame allergy, you know how difficult it can be to manage. Sesame is the ninth most common allergen, but the FDA currently does not require it to be labeled on packaged goods.
Yet there is a proposed bill, the Food, Allergy, Safety, Treatment, Education, and Research (FASTER) Act, S. 3451/H.R. 2117, which if passed, will require sesame to be included on food labels.
(You can tell your members of Congress to co-sponsor it here).
When she passed the challenge, we were elated—and knew that at least one allergen was behind us.
While she could eat a sesame bagel, in the past few months when she ate hummus, her throat would itch.
Then we ordered Lebanese food and after she broke out in hives, our doctor said we should challenge tahini to see if it was sesame or tahini.
We never did the challenge and the bottle of tahini sat in my refrigerator for a few weeks—which I’m now grateful for.
THE DAY MY CHILD HAD A SEVERE REACTION TO FOOD
July 19, 2020 was a normal—albeit COVID-19 normal—Sunday in our home.
We had watched online church and my kids baked pumpkin muffins.
My husband planned to take them to the community pool later on in the day.
That morning, I had gone food shopping and bought two items I never buy: pretzels (for my kids) and soy chocolate milk (for me).
After lunch, my daughters asked if they could have both the pretzels and the milk and I agreed.
Within minutes however, my daughter was clearing her throat and hives had developed on her face.
Yet unlike every other time she had hives in the past, these were larger. Not like welts, but definitely more pronounced.
I gave her Benadryl and thought it would all go away within minutes like it always had, but then she started to complain that her stomach hurt.
I asked if she thought it was because she had eaten too much, which often happens, but that wasn’t the case.
As a child with special needs, sometimes it’s difficult for her to articulate how she’s feeling and for us to decipher what is going on, but this time, she made it clear.
She pointed to an isolated area of her stomach, and I knew this was no run of the mill stomach ache.
She had anaphylaxis—a severe, potentially life-threatening allergic reaction to food.
I started to worry—something all moms do, but as a mom with Generalized Anxiety Disorder, I do everyday.
At 1:23pm, I texted—and then called—my husband at work and he started to drive home.
At 1:28pm, I called the pediatrician’s office and left a message with their answering service.
I hesitated to use the AUVI-Q (epinephrine) because I knew that we would have to go to the hospital and I wasn’t sure if the reaction even warranted it.
The pediatrician wasn’t calling back so I did what every mom does—turn to Google.
I went to the American Academy of Allergy Asthma and Immunology‘s website and read that if the stomach is involved, you need to administer epinephrine.
By this point, I was in full panic mode but trying to stay calm for my daughter.
I opened the box for the AUVI-Q, pulled out the red bottom, and listened for the prompts.
I pressed the injector to her thigh, administered the medicine and she screamed in pain. I called 911. It was 1:40pm.
Within minutes, the EMTs were in our home, talking to my daughter and checking her out.
They confirmed that I made the right decision in giving her Benadryl and the epinephrine.
To make things even more interesting, my daughter has a heart condition.
They told me that although that was a concern, the medicine would be out of her system in 10 minutes and the effect on her heart was the same as if she had been running around outside.
Still, they said she should get checked out at the hospital but said it was fine if my husband took her.
Due to COVID-19, they recommended only one parent go so I stayed at home with my daughter.
After a few hours, my daughter was back home and back to her happy, talkative self.
While the providers in the hospital said it was unlikely that a second reaction—known as biphasic anaphylaxis—would occur, I still worried.
That night, I slept beside her.
COVID-19 IS PUTTING KIDS WITH FOOD ALLERGIES AT RISK
The next day, I called my daughter’s allergist to tell him what happened and to ask questions.
We spoke about the FDA’s temporary relaxed food labeling guidelines, which allow companies to substitute certain ingredients without changing their labels.
According to this Consumer Reports article, the substitutions cannot be the top 8 food allergens but when it comes to ingredients like sesame, the guidance is more vague. The article states:
It says manufacturers “should avoid” using as substitutes other foods that are known to cause allergies or food sensitivities, including sesame, celery, buckwheat, glutamates, and sulfites. But the guidelines allow manufacturers to make decisions about what constitutes a health and safety risk at their own discretion, without any transparency or accountability, or reporting to the FDA that they’ve done so.
My daughter’s allergist said despite these new rules, he believes that it was sesame in the pretzels—or a cross contamination—that led to her allergic reaction.
When I contacted Synder’s of Hanover, the company that makes the pretzels I purchased, this is what they told me:
Yes, we currently produce products with sesame and share production equipment.
Robust efforts are made to prevent any possible cross contact. All of our facilities follow FDA requirements for manufacturing with any allergens, including adhering to good manufacturing practices (GMPs). These practices include, but not limited to, thorough cleaning of machinery and scheduling product runs on shared lines to segregate allergen and non-allergen ingredients. Further, we regularly test our cleaning practices to be assured that our programs are effective.
I also contacted Silk, the company that makes the soy chocolate milk she consumed. They’re statement was much of the same:
Any of the top 8 allergens must be listed on the container as an ingredient if it is used. However, our products are made at multiple facilities. Because of this, we cannot guarantee certain ingredients are not being kept at certain facilities. We have very stringent allergen control practices at each one of our facilities to ensure cross-contamination is not an issue.
So while my daughter still consumes a diet made up of mostly whole foods, there’s still a risk that she’ll have another allergic reaction to anything in a package, whether it’s a granola bar, brown rice or bread.
KNOW THE ANAPHYLAXIS SYMPTOMS TO PREVENT A REACTION TO FOOD
I always knew that hives or shortness of breath were symptoms of an allergic reaction, but I never really knew all of the symptoms.
Also, I was never clear about when to give epinephrine and there seemed to be a difference of opinion between doctors.
After my daughter’s allergic reaction, her doctor said that for any external symptom like hives, Benadryl is OK, but internal symptoms should be treated with epinephrine.
He said however, that we know our child best so we should always use our best judgement.
Therefore, I recommend that even if you think you know what to look for, make sure you know all of the symptoms of food allergies (here’s a list).
Also, talk to your doctor about your child’s individual treatment plan, get it in writing, and make sure every person who will care for your child (even moms on playdates) understand it and know what to do.
LEARN HOW TO GIVE EPINEPHRINE
I’m a Type-A, rule follower, through and through, but I’m embarrassed to admit that I didn’t pay much attention to how to use the epinephrine injector because I never thought I’d need to.
When we carried an EpiPen, I recalled the basics of administering it but I didn’t review it through the years and I never practiced with the tester.
The same went for the AUVI-Q, but I was grateful that I had it over the EpiPen because the electronic voice instructions made it easy to administer while I was panicking.
MY CHILD’S SEVERE REACTION TO FOOD MADE OUR FAITH STRONGER
Pre-COVID-19, our family attended church every week and we were involved in church groups and ministries.
In the last few months, church has been online and it’s been challenging to keep my kids engaged in their faith journeys—something that had been on my mind.
While we pray every day together—at meals and before bed—it took me by surprise that while everything was going on, both of my daughters asked me if I could pray with them.
After my daughter left for the hospital, my younger daughter sat beside me and burst into tears. “If anything would have had happened to her, I don’t know what I would have done.” She’s 7.
Then she asked if I cried when I gave her sister the epinephrine. When I responded, “no, why, where were you?” she said, “I was in my room praying and holding my stuffed animals.”
So while I wish we never had to go through this experience, at the same time, it’s just one more way the Lord has used our circumstances to strengthen our faith—and something I’m grateful my kids experienced first-hand.
BACK TO SQUARE ONE WITH FOOD ALLERGIES
While my husband and I always took precautions to prevent an accidental exposure, our overall attitude about our daughter’s food allergies became more relaxed through the years.
In general, we knew what was safe to eat and what was not. There was always a risk, especially when we went out to eat, but we seemed to have avoided any severe reaction to food.
After this incident however, and the fact that sesame is still not considered a top allergen, I feel like we have to be as diligent as we were in the beginning: scanning labels, asking questions, and making sure everyone else understands the risk and what to do in case of an allergic reaction.
By the grace of God, my daughter is alive and healthy. While she has advocated for herself since she was in preschool, telling teachers about her food allergies and asking does it have sesame or nuts? a girl always needs her mama and I’ll be there every step of the way.