Aug 18, 2014 Allie Wenner Uncategorized
From the time she was 11 months old, Lindsey Stoppacher’s oldest daughter, Harper, did not like the taste of peanuts.
Stoppacher recalls offering Harper a bite of a peanut butter cracker at age 2 and having her daughter immediately start coughing and spit it out of her mouth. A year later, Harper reached into a bowl of mixed nuts and welts started popping up after she touched her face. And then there was the time when Lindsey was driving through a snowstorm and gave Harper a peanut butter snack. It took about five minutes until Harper started projectile vomiting all over the car.
“I assumed it was the salt that irritated her face and carsickness during the snowstorm,” said Lindsey, who lives in Fayetteville. “It just did not dawn on me; [the idea that she might have a food allergy] did not even enter my mind.”
The final straw was when Harper was 5 years old and wanted a box of chocolates for Valentine’s Day. Lindsey remembers Harper telling her father specifically not to buy a box that contained chocolates with peanuts, because she didn’t like them.
“So my husband bought her a box, and there was no warning label about a nut in it,” Lindsey said. “But the first one she bit into, she started spitting out. Next thing we know, she was in the bathroom, trying to scrape away the sensation in her mouth with a toothbrush and holding her throat open. When she came out and started projectile vomiting again, it finally hit us – that ‘well, maybe this isn’t right.’”
The truth about food allergies
When the Stoppachers visited the pediatrician the next morning, they discovered that Harper was one of as many as 15 million Americans or one in 13 children to have a food allergy, according to foodallergy.org. The doctor said Harper was allergic to both peanuts and tree nuts, which include almonds, walnuts and cashews.
The news came a day before their family was scheduled to take a big trip to Florida, and Lindsey found herself on the internet from the time they arrived home until almost right before they left to look up everything and anything relating to peanut allergies: how to use the different medications, how to fly with someone with peanut allergies, how to safely feed her daughter and what precautions to take at restaurants.
“In a way, I’m kind of glad it happened that way,” Lindsey said. “Because if the plans had not already been in motion, maybe I would have been too scared. And if I’m too scared to help her live her life, who is that helping?”
And as it turned out, Harper was diagnosed with a “class six” peanut allergy, which, on a scale of one to six, denotes a high or severe allergy.
“The allergist said to me, ‘In 30 years, I can’t decide if she’s the worst case or second worst case I’ve ever seen,’” Lindsey recalls. “And Harper was in another room, so I started tearing up, and he said, ‘If she was my daughter, I’d cry too.’ He wanted me to understand what we were dealing with.”
A growing concern
In 2013, the Center for Disease Control released a study which reported that between 1997 and 2011, food allergies in children increased approximately 50 percent. Additionally, the study found that that food allergies result in more than 300,000 ambulatory-care visits a year among children under the age of 18. Food allergy is the leading cause of anaphylaxis outside the hospital setting.
According to Nancy Mitchell, a pediatric nurse practitioner at the Upstate outpatient pediatric practice, every parent, teacher or caregiver to children with food allergies should know how to use an EpiPen, a device used to deliver a dose of epinephrine if the child goes into anaphylactic shock.
“Some kids with really severe peanut allergies can’t even be in the same room with a kid who’s eating a peanut butter and jelly sandwich,” Mitchell said. “It is very severe and people can die from a severe anaphylactic reaction. It is very serious.”
The Stoppachers have worked with the Fayetteville-Manlius School District since Harper entered Kindergarten to ensure that her needs are understood by faculty members. They met with the principal of Mott Road Elementary, the head of janitorial staff, Harper’s teacher, the head of the cafeteria staff and the school nurse to discuss the protocols and how to make sure that everyone who needed to know about the situation would be informed.
“I said, ‘this is what my pediatrician is recommending – what do you think? Are these accommodations possible?’” Lindsey said. “And most of them were – one they decided to change, and they added some of their own.”
Changes included making it mandatory for all district bus drivers to know how to use an EpiPen and what to do if a child has an allergic reaction, creating “peanut-free” classrooms – where students may bring peanuts to lunch but not in the classroom and even going a step further and creating “peanut-free” lunch tables, which are cleaned with separate rags and are open to any child who does not have peanut products in their lunch.
Life changed a bit for the Stoppachers after Harper’s diagnosis. They avoid bakeries, have to put a special order at Tops if they want Italian bread and can’t go to Asian restaurants at all.
All of that isn’t a big deal for Lindsey – but she said that when Harper was first diagnosed, one of her biggest fears was that her daughter would be excluded socially because of her allergies.
“Would parents be too afraid to invite her to a birthday party, or a sleepover?” Lindsey said. “However, that has not been the case at all. People have been wonderful – so supportive, absolutely amazing, and that’s been a pleasant surprise.”
But that doesn’t mean that they haven’t met their share of misinformed people. Lindsey remembers one occasion, when the whole family was out to eat with some friends, and their waiter called over a newly-hired manager to make sure everything was okay after learning about Harper’s dietary restrictions.
“The manager comes over to us and says, ‘is she gonna die or something if she eats this?’” Lindsey said. “Luckily, Harper didn’t hear it because she was distracted by her friends. But I calmly went to seek him out after the meal and said, ‘You might not know how that feels, because a person with a severe food allergy really does fear that death is a potential consequence of eating the wrong thing.’ He was very apologetic, so it worked out, but you really have to be ready for anything.
“From an advocacy standpoint, most people are really good about it – we just have to accept that maybe some people just don’t understand it, or don’t understand the level to which we have to be careful.”
And even though Harper, now 11, is “very mature and responsible about what she can and can’t eat,” Lindsey said that the fear never truly goes away.
“As she gets older, the fears change,” Lindsey said. “But I would say communication goes a long way. Regardless if you’re going to a new friend’s house, a birthday party or a new school – it definitely helps. The fear never goes away. But I can let fear rule me and not let her do anything, or I can let her live her life.”
FARE allergy walk
Currently, researchers are trying to discover why food allergies are on the rise and to learn more about the impact of the disease in developing nations. There is no cure and no determined cause of food allergies, although a child’s risk of food allergies is higher if he or she has a parent who suffers from any type of allergic disease, including asthma, eczema, food allergies or environmental allergies such as hay fever, according to foodallergy.org.
On organization, Food Allergy Research & Education, is hoping to find a cure. Its mission is to find a cure for food allergies and to keep individuals with food allergies safe and included by doing research, providing education and increasing awareness. And for the first time ever, FARE is holding a “Walk for Food Allergy” in Utica on Sept. 13.
Registration is at 9 a.m. and the walk starts at 10 at the SUNY IT campus center building. There will be family activities and games following the walk and every participant under 18 gets a free T-shirt. For more information or to donate, visit foodallergywalk.org/utica2014 or facebook.com/FAREwalkUtica.
“Every family has to treat it differently, in a way that works for them in their particular situation,” Lindsey said. “But we just try to make sure that she can live as normally and as safely as possible.”