across the table
"At the age of 3, Lilly told her grandmother that her throat was closing up after eating at a Chinese restaurant. The epi pen was administered.“
"This was one of my favorite maternity sessions, simply because this Mama was so excited to capturing her pregnancy. Previous losses gave them gave them such gratitude for this growing baby in her belly and it showed in her eyes and in her smile."
"Creating sauce from fruit is so delicious and perfectly simple. It's the perfect way to welcome summer into our kitchens.
You can add it to ice cream, shortcake, pancakes, french toast, angel food cake, biscuits, oatmeal or just lick it directly off the spoon.
June 14, 2019
About to board a school bus to chaperone a field trip, I overheard a conversation among parents about children with allergies and how they don’t understand why home baked goods and candy aren’t allowed in the elementary school. How do they allow one child to ruin everyone else’s experience?
As I eavesdropped, I could see where they were coming from…aren’t cupcakes and Reese’s a part of life? For me personally, I enjoyed this rule because it benefitted me on a personal level. Not because my children have allergies but because I didn’t want to spend extra time managing how many pieces of candy they could consume after getting off the school bus.
This was in the early days of this rule, where it was new to parents and students, teachers and staff. It was a tough new rule.
But are cupcakes and Reese’s a part of life?
Not for some. For some, they mean death.
But part of life? Is understanding, listening, educating yourself and supporting the people that surround you.
The purpose of this post isn’t to scare or take sides, it’s simply to help people understand WHY this is such a big issue.
Did you know…up to 32 million Americans, including 1 in 13 children, have a food allergy and nearly 40 percent of these children have already experienced a severe or life-threatening reaction?
I sat down with Kim and Scarlet at Red Cup Cafe in downtown Chesterton. Admittedly, we didn’t drink coffee, we had smoothies and Italian sodas and lunch. Their lunch menu is pretty amazing, I highly recommend.
Scarlet’s daughter, Lilly, age 12 is allergic to shellfish and peanuts, she also has idiopathic anaphylaxis, along with oral food syndrome.
I’ll break these down for you.
If Lilly comes in contact with peanuts or shellfish, she’ll likely go into anaphylaxis. She is highly allergic to peanuts. Anaphylaxis causes your immune system to release a flood of chemicals that can cause you to go into shock, the blood pressure drops suddenly, airways narrow which blocks breathing. Rapid pulse, skin rash, nausea and vomiting can also occur.
Anaphylaxis requires an injection of epinephrine (epi pen) and a follow up to the emergency room. Treatment after the injection typically lasts up to two weeks. Sometimes, two injections are necessary.
If an epi pen is not available, the reaction could be fatal.
Idiopathic anaphylaxis is a serious response that often involves swelling, hives, lowered blood pressure, diarrhea and in severe cases, shock. The term “idiopathic” means without a cause. So, Lilly, goes into anaphylaxis randomly, without warning.
Oral food syndrome prevents her from eating raw fruits and vegetables. (click here for additional information.)
Since Lilly was a little baby, she would have explosive vomiting. “We tried different formulas, she was scoped, very early on, she would have hives all over her body,” Scarlet explained.
Upon having peanut butter, she reacted with hives all over her body. Scarlet said she was ignorant to the severity of food allergies. After the breakout, she was treated with Benadryl and sent to Lurie’s Children’s Hospital in Chicago. They began to piece together that Lilly would often vomit while at fish fries, leading them to learn another allergy to shellfish.
At the age of 3, Lilly told her grandmother that her throat was closing up after eating at a Chinese restaurant. The epi pen was administered.
At the age of 4, they were attending a birthday party, “I scanned the tables to make sure there were no nuts but a cousin opened up a bag of Reese’s Pieces and gave one to Lilly. She grabbed her neck, her face was blue and she began puking and she was just out of it. I took her to Lurie’s, her blood pressure was so low, she was close to death.”
Even though an epi pen is administered, there is a 20% chance of going back into anaphylaxis, a second reaction can occur 24-48 hours later.
“Jack was born 21 days early. He was the happiest baby and we felt overwhelming joy with being parents. But there were issues early on. He was colicky. He had ear infections chronically. He was constantly scratching his face and head.” Kim explained.
Jack was 7 months old when he was diagnosed with eczema at Lurie’s. After months of fighting the scratching, his skin problems finally seemed to be better just 48 hours after seeing the pediatric dermatologist.
When Jack was starting to eat solid food, they offered scrambled eggs after trying all of the fruits and vegetables. “He just spit it out, so we just tried it again the following weekend,” Kim said.
On a Sunday morning, before church, Kim’s husband, Nick, was giving Jack breakfast, which included eggs, while Kim readied for church. “I don’t think he likes eggs,” Nick said to Kim. They noticed a hive on his chin.
“Maybe he’s allergic,” Kim said casually.
“I was so flippant. I just didn’t know what that actually meant, we were told to watch for allergies and sensitivities when trying new foods but were never educated on WHAT to do or what to actually look for,” Kim said.
They cleaned Jack up and put him on the floor to play and noticed he had become lethargic and wouldn’t crawl. At that point, they decided to take him to the walk-up clinic, which, upon arrival, they found was closed. At this point, Jack’s eyes became swollen.
“We started to panic and drove to the closet medical facility, which was an ambulance depot. Nick jumped out and started banging on the door.“
The paramedic came out, opened the car door, reached in for Jack and explained that he was just going to take him out and then carried him into an ambulance.
“Looking back, it feels like slow motion, they were trying to find an IV small enough and they just seemed very nervous.“
“Are you taking him somewhere?” Kim asked.
They answered that he needed to get to the emergency room right away, Nick, still holding Jack, while holding the oxygen mask in the ambulance, rode with Jack while Kim followed.
“They turned their lights on and sped away. It was then that the realization that something is really wrong hit me. I realized he could be gone when I arrived there.”
“I was fortunate that my sister’s friend worked at the hospital, she came out to the parking lot and told me that he was okay,” Kim said.
The physician confirmed that it was likely an egg allergy but focused solely on the fact that Jack had thrush. Once again, Kim asked about the egg allergy, the doctor confirmed and continued to focus on the thrush.
After four hours, they were on their way home. Exhausted and in a daze, they realized they never even saw a pediatrician and were sent home without an epi pen.
A few days later, Jack’s pediatrician prescribed an epi pen and referred them to an allergist. An appointment was set for two months away, in the meantime, they were given very little instruction, which included “don’t give him eggs and use the epi pen, if necessary.”
Jack’s initial testing came back very low, the following year was even lower. So low, in fact, that they were surprised he had ever been in anaphylaxis. They issued an oral challenge where he was to eat a muffin, while at the hospital, under observation.
Broken into four quarters, he ate the first quarter and was fine. But after the second quarter, Kim noticed he began acting lethargic. Because his blood pressure and heart rate were fine, the physician felt he was fine. Per Kim’s insistence, they called off the challenge. Per protocol, he had to stay for observation. It was then that he began vomiting. They administered the epi pen.
After this, Jack’s allergy to egg increased year after year.
Overall, both Kim and Scarlet feel supported and heard at many healthcare facilities. However, one of the common frustrations is the lack of updated information for some health care professionals and the lack of understanding of how serious anaphylaxis is.
They are constantly advocating for the best care from physicians but also at school.
Allergies is now considered a disability under the ADA which means a 504 plan can be created for their children.
A 504 plan is for all disabilities, it’s created so accommodations are made specifically for their child. Parents work with the school nurse, teachers, counselors and principals to come up with an appropriate plan. A 504 plan is a legal and binding document that must be followed.
“Allergies is like walking around with a loaded gun. Any second the most minor thing can trigger the worst-case scenario. A plan needs to be in place,” Scarlet said.
For Kim, panic attacks began months before Jack attended kindergarten, in hindsight, she wishes she had sought therapy to walk her through that difficult transition.
“The first and second day of school, I was scared to leave the house. On the third day I left for a quick trip to Target. It was then that the school called because Jack had broken out in hives.”
As the two become older, they become a little more relaxed because the kids begin to understand the seriousness of their conditions, but then a new host of worries occur.
“As Lilly is getting older, I see her starting to be more affected by her allergies on a social level. They limit her ability to participate in certain activities. Lilly has one friend that she is allowed to have overnights with. Her Mom understands the risks and knows how to use the epi pen, but there are social events that we just can’t let her attend. It’s too risky,” Scarlet explains.
“We’ve also discussed the dangers of kissing, which can be deadly. I’ve joked about her finding someone with a peanut allergy just to help keep her safe.”
She adds “she missed over 22 days of school this past year. So far, the school have been great but we both have anxiety over attending middle school next year. Students are allowed to have snacks in class, even if students in her class can’t have peanut products, what about the class before her? And if she gets sick? Who will help? Lilly can’t just be sent to the nurse by herself, she has to have someone with her.”
Is banning peanut products in schools the answer?
Companies like Southwest Airlines no longer serve peanuts on their flights, United is close to doing the same.
Because allergies is considered a disability, they are able to board planes early, which gives them a chance to wipe down their areas.
Traveling with children who have allergies presents a whole new layer of complexity. Hotels are booked based on proximity to large hospitals. “While driving while on vacation, I’m constantly paying attention to where hospital signs are, I just always have to know, I can never let my guard down,” Kim explains.
“We’ve learned that Marriott Hotels understand the seriousness of food allergies, so we feel pretty comfortable eating in their establishments but typically, we don’t risk it. And if we do, Jack just won’t eat there. Dairy Queen is our go-to place.“
While traveling, they feel the vibe of the place from the personnel. “If we ask a question about allergies and it takes them awhile to respond, we know it’s likely not going to be safe,” Kim says.
Part of their frustration is people not understanding the difference between food allergies and food sensitivities. “You’re either allergic or you’re not, there is no in between.”
They both agreed that the people who hover over the sensitivity line but still occasionally partake, make it seem like it’s not a serious issue, except it is. It’s the difference between life and death. They also discourage the use of home-based allergy testing. “Numbers need to be correlated with some sort of reaction, testing should be done by an allergist,” Scarlet explains. Scarlet’s doctorial project was focused on children with allergies and keeping them safe in schools.
Schools, doctors, traveling, dating, restaurants, their lives are completely affected by allergies.
“I feel grief,” Kim says. “I allow myself to feel it for a day, I’ll allow myself time to cope and I always remember that things could be much worse. But I grieve for the simple life that we just don’t have.“
One of the biggest areas of sadness comes from family and friends. When they don’t feel supported, it brings a great deal of sadness.
“I don’t expect accommodations everywhere we go. I realize it can be a challenge— especially with egg, because there is egg in so much. But I do appreciate it when alternatives are presented to us. I am overwhelmed with gratitude when someone does make the accommodations.”
“Food is celebratory and it’s how people connect, but we just can’t always participate, it’s too risky.”
“Fortunately, Jack hasn’t had any scares because we are so diligent. Sometimes I’m worried that we are fueling future anxieties for him but are just doing the best that we can.“
“Although we are different, we are still just like other families. We love each other immensely. We love to travel, we love the beach and water parks. My kids both play soccer and we are active in our school and community. We want to do those things without fear, just as your family does. So if it means that cupcakes or Reese’s can’t be in the classroom, but popsicles CAN. Why is that a problem? It’s about the treat. Kids don’t care if they get a cupcake at school or popcorn or even a non-food treat, like a Smencil. It’s in the presentation. If it’s presented as a treat or a reward, it’s just as wonderful to them as a cupcake.”
So as friends, neighbors, family members, I can’t encourage you enough to do a little more to educate yourself, to share with your family members so they understand, to take the extra step to find new recipes.
My identical twin brothers both suffer from Celiac disease which means they can’t have gluten. This isn’t a fad, this isn’t a choice, it’s a life threatening, health altering issue. Please pay attention, please don’t make assumptions. Take some time to educate yourself.
Over the next week, I’ll be sharing some easy recipes that are great for people with certain allergies.