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Addressing life-threatening food allergy is a team effort for Clarence family

Cooper Naab has gotten used to living with a life-threatening peanut allergy.

The 7-year-old from Clarence tackles life with the same zest as lots of kids, but his condition comes with a vigilance that most outside his close-knit support group would find hard to understand.

If he ingests just a slight trace of peanut, he could get extremely ill extremely quickly, and might die.

“With these allergies, we’re not talking about a reaction that comes with a sneeze or a rash. We’re talking about a life-threatening allergy. That’s important for everyone to know and understand,” his mother, Kelly Naab, told me during an interview at the family home last weekend.

Naab, 37 – subject of the In the Field feature this weekend in WNY Refresh – worked as a registered nurse while attending graduate school at the University at Buffalo to become a pediatric nurse practitioner. She works at Williamsville Pediatric Center.

Her home life changed when Cooper had a bad reaction to a small taste of peanut butter when he was 2. Her work and civic life changed, too.

She is helping to organize the FARE Walk for Food Allergy Aug. 8 in LaSalle Park. Register at foodallergywalk.org. She also recently approached the Buffalo Bills, Sabres and Bisons about creating peanut-free seating sections during at least some home games.

The lives led by Cooper, his mom, his dad, Tim, and brother, Ryder, 4, is uncommon – but hardly rare.

About 15 million people have food allergies, including 6 million children, according to FARE, short for Food, Allergy, Research & Education. According to the group’s website, food allergies:

  • Affect 1 of every 13 children 18 and under. That's roughly two children in every classroom.
  • Climbed by 50 percent from 1997 to 2011.
  • Send someone to the emergency department once every 3 minutes somewhere in the U.S.
  • Are the leading cause of anaphylaxis – a severe, swift and sometimes fatal reaction – outside of a hospital setting.

Researchers continue to seek a cause for food allergies but it remains elusive. Eight foods considered the top allergens are peanuts, tree nuts, milk, eggs, wheat, soy, fish and shellfish.

Reaction to these and other foods of those who are allergic can range from mild to life-threatening.

Cooper is the only one on both sides of his family to have such an allergy.

His parents carry EpiPens and they also are kept at the homes of other relatives and by the nurse at his elementary school. All can administer the medication epinephrine, considered the first line of defense in the event of a severe reaction.

The best protection is allergen avoidance.

That’s where Cooper and his support team come in, according to his mother.

Here’s what she told me about what family members consider as they go about their daily lives.

Q. How did things change after the diagnosis?

We had to change the way we eat at our house, what we bought at the grocery store. I no longer bring peanut butter in our house or any products that contain peanuts. Tim and I changed our diet right away. It changed the way I grocery shop. I have to read the label on everything I buy. Even if it was safe last week, labels change a lot. I read them and re-read them before I purchase anything. We call restaurants ahead to make sure they can accommodate us. You have to really be careful about cross-contamination, so if something with peanut butter or peanuts is made in a facility that makes something he might want to have, it’s not considered safe. So bakeries, donut shops are not safe for him. There’s just no safe zone.

Q. Are most restaurants safe?

We have found quite a few. Because of more awareness, restaurants have become much more careful in their preparation. We have found them to be quite accommodating. Because he’s only 7, we don’t go out very much. We have our staples that we stick with.

Traveling is tough. Airlines have been accommodating. We recently took a trip to Florida and they made a stand not to serve peanuts on that flight. He was one of four people on that flight with a peanut allergy. They let us pre-board and wipe everything down. Mostly you have to ask, speak up, stand up. That’s what I’ve always had to do for him, advocate. I’d say we haven’t let it stop our life too much. We can pretty much enjoy anything.

Q. It sounds like there’s a lot more planning that goes into things.

Yeah. When he gets invited to a birthday party – and his friends have been great about this – I often make the cupcakes for the whole group or I bring my own, because people’s kitchens aren’t always nut-free. But by planning ahead, and bringing our own snacks, it’s not hard.

Q. If you’re in a public place where there might have been some peanut preparation, is it a situation where as long as Cooper doesn’t eat anything peanut-related, it’s OK?

Yes. Someplace like a Tim Horton’s, there’s really no safe preparation area because so many products are made with peanuts. Those places will tell you, they’ll have a sign that says if you have a peanut allergy, this place is not for you. Certainly restaurants make a wide variety of foods and they can create safe preparation areas and that’s where we go.

Q. Any in particular you want to give a shout-out to?

Ted’s has been great. Quaker Steak and Lube. Chipotle has really taken a stand on being allergy friendly. Our local pizza place, Mazia’s, has been great. Pesci’s Pizza, Papa John’s and, believe it or not, McDonald’s.

Q. Even labels can be tricky, because not everything in a product may be on a label, correct?

The law states that if one of the top eight allergens is included, food-makers have to list that. But that don’t have to list if it may contain a trace of something or is made on shared equipment. A lot of companies do list that, and that’s nice, and we would avoid that product. But they don’t have to. Then you have to use your best judgment. We don’t give him anything from a bakery or homemade, just to be safe. I do a lot of baking here in the house.

Q. How does that affect baking?

I buy in the grocery store, read the labels and bake in my kitchen, which is nut-free. We err on the side of caution.

Q. Are there any staples of the family diet that take into account all of this? What can he eat and how have you built family eating around that?

I’ve done a lot of research and a lot of reading to find out what he can eat and what is safe. As he’s getting older, I’m finding more and more. His diet is expanding. He’s into sports and I have to send snacks there. I have to send snacks to school. I’ve found granola bars that are safe for him. Obviously fruits and vegetables. I think it makes us eat a little better, too because we have less processed foods. Fewer ingredients mean less of a chance for cross-contamination, so we eat more naturally.

Q. What was it like when Cooper started going to school?

That was a whole new thing for us. His preschool was nut-free, I had more control and he was only there for a couple of hours a day. I’d pack his lunch and it was up to me when he ate. Then he started school and that’s where I started to realize I had to navigate his way in, make everyone aware and prepare him to have to look out for himself – which is something a 5- or 6-year-old really shouldn’t have to do. But he has had to do that and he’s done a great job. He doesn’t have a choice.

They put him at a peanut-free table in the lunchroom with a buddy who has a safe lunch. In the last couple of years, he’s into sports, he has more friends and he’s at school and I decided, “There’s not enough awareness out there, enough education.” I think with a little bit more awareness and education – with just a little imposition on people in the world who aren’t faced with allergies – we can really make a huge impact and help these 6 million children who really are affected. He’s certainly not alone.

Meeting with the teacher, the school nurse, the principal, making sure that they were aware. They have really taken to the awareness aspect. I became the food allergy coordinator for his school (Ledgeview in Clarence). I quickly realized when he started school, if we went to a bake sale or a fall carnival or an ice cream social, I didn’t know if he could eat the food they were providing. Who did know? I found out that a lot of people who had allergies didn’t go, or they brought their own snack. I thought, “This is easy enough to fix. We can just serve stuff that’s safe or we can have a safe section so kids can feel part of what their friends were doing.” Last year at the ice cream social, we had two choices. This year, we had one and we made sure it was safe for everyone. I provided several dozen nutfree treats at the fall carnival that I baked so that kids with allergies could purchase and eat a cupcake, just like their friends.

Last week was Food Allergy Awareness Week and every morning on the announcements, facts about food allergies were read. (Naab wrote them). Last Wednesday, the school sent home a flier and also asked kids to wear blue or teal to honor friends with food allergies. It was so wonderful to see so many kids wearing blue.

It’s great to see the kid’s looking out for friends and realizing it’s OK to have allergies, it doesn’t make you who you are. The kids can also go home and share what they’ve learned.

Q. What do you think the future holds for Cooper and other children who have peanut allergies?

I’m hopeful in what they’re finding, the studies that they’re doing. There’s been some initial work with the patch (read a story here about this new research). I’m hopeful that should that come to our area, he would be a candidate for that. The goal would be not that he could ingest a whole peanut butter sandwich, but he could accidentally, or purposely, take a bite or two and not have it be life-threatening.

Right now, his allergy is considered life-threatening. A small ingestion of anything with peanuts in it would be potentially deadly to him. If I knew he could eat at a restaurant without having to be so concerned, or keeping things sterile, or being so nervous at a baseball game or on an airplane, that’s the whole thing. As much as you try to enjoy life, you always have to be on guard. I always have to think twice, three times, with everything that involves food.

He’s learning, too. He’s learning to read labels, stand up for himself, to question things if I’m not around ... so he can look out for himself.

Q. What are some resources that have been helpful to you as you’ve reconfigured family life?

Social media is very helpful in a lot of ways. There are many different mom groups and blogs that I have been able to read about. The FARE website, foodallergy.org, is very helpful and I’ve found it to be my most commonly used place for sound advice. There’s a Buffalo Food Allergy Group that meets monthly (7 to 9 p.m. the third Monday of every month at the Cleveland Hill Fire Hall, 440 Cleveland Drive, near Harlem Road, in Cheektowaga). It’s always nice to b around other families who deal with it, to feel like you’re not alone. Over the years, my support group has gotten bigger and bigger, especially because I’m meeting different people and am involved in the Food Allergy Walk. It’s helps a lot for me to talk to other moms or introduce Cooper to other kids who live with the same things, so that he doesn’t feel alone.

The goal is to make sure that he doesn’t feel any different. Reaching out to other families helps us all.

email: refresh@buffnews.com

Twitter: @BNrefresh

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