Local mom spreads nut allergy awareness

By: Mary Beth Almond | Rochester Post | Published June 7, 2012


Four-year-old Evan Rutter of Rochester is never too far from his own personal superhero. While it might not be able to fly like Superman, or climb walls like Spiderman, his EpiPen does exactly what his idols do — it saves lives.

An EpiPen is a device that injects epinephrine into the thigh of someone having a severe anaphylactic allergic reaction and can buy critical time to get a patient to the hospital for further treatment.

Evan Rutter’s mom, Lisa Rutter, said she’s lucky her oldest son — who has a life-threatening food allergy — has never had to use his, but she takes comfort in knowing it’s there in case of an emergency.

Unlike his younger brother, Hayden, who has no food allergies, if Evan has a peanut or tree nut, he risks going into anaphylaxis — a life-threatening allergic reaction that can cause breathing problems, loss of consciousness and even death within minutes after contact with an allergen, according to the Asthma and Allergy Foundation of America.

“We’ve been lucky because we haven’t had to use the EpiPen,” Lisa Rutter said. “But there were times — now looking back at some of the stuff that I did — (when we probably could have used it). Now that I know what I know, never ever would I do some of the things that I did.”

The first signs
Evan Rutter was 3 when he was diagnosed with a life-threatening peanut and tree nut allergy, but he showed signs much earlier, according to his mom.

“We had suspected it for awhile, although we were in denial of the whole thing because we didn’t have any food allergies in our family,” Lisa Rutter said. “We always ate peanut butter and nuts in our house, all the time. When he did have little reactions, it was kind of dismissed by our pediatrician, so we never really looked at it seriously.”

Looking back, she distinctly remembers her son’s first allergic reaction — although she admits she had no idea what was happening at the time.

It was just like any other weekend. Lisa Rutter and her husband, Doug, were at home in their kitchen when they decided to give then 1-year-old Evan a small lick of ice cream.

“It was peanut butter ice cream, and I didn’t think anything of it because it just wasn’t on my radar, so we gave him a lick of ice cream and he got a rash all around his mouth. I still didn’t put two and two together. I thought ‘What the heck, why did he get a rash around his mouth?’ And then I looked at the ice cream box and I remember saying to my husband, ‘Oh my gosh, this has peanut butter, what if he is allergic to peanut butter? I know this is not good,’” she said.

At his next doctor appointment, Lisa, mentioned the reaction to their pediatrician, who advised her to simply avoid giving her son peanut butter until he was 3 or 4. Following doctor’s orders, she and her husband continued to eat foods containing peanuts and peanut butter, but made sure not offer those items Evan — which they soon learned wasn’t enough to keep him symptom free.

In the months and years ahead, Evan’s eyes would swell up every so often, and he would suddenly throw up, but his parents had no idea why. Lisa now believes the symptoms were allergic reactions likely triggered by peanut residue on her hands after eating peanut products, or from cross-contamination — which occurs when a food that does not contain any allergens is tainted with an allergen during food preparation, cooking, storage or serving — like when they would give their son Gummi Bears from a self-serve kiosk at a candy store using the same scoop that was likely also used to dispense nut-related products from a different container.

It wasn’t until Lisa’s father gave her oldest son a peanut butter cookie while shopping at the grocery store that she finally realized.

“As soon as Evan took a bite from it he was like, “Eww, Mommy. Gross.’ He didn’t like it at all,” she said. “At the time, I didn’t know if he was allergic, but we were still avoiding it … so I took it back to the counter and got him a regular cookie, but within seconds his whole demeanor had changed. I was getting aggravated with him because I didn’t realize what it was. He was so cranky, so I had to take him into the bathroom and he then he just threw up everywhere. So now I believed it was the cookie,” she said.

Diagnosis and changes
After moving back to Michigan from Illinois, where her two sons were born, the Rutters found a new pediatrician, who suggested that Evan get an allergy test. Sure enough, at the age of 3, he tested positive for a life-threatening peanut and tree nut allergy — a diagnosis that would change their lives forever.

“When we got home we got rid of everything in the house — we have no peanut butter, nothing — because my doctor said, point blank, ‘he could die from this. You need to get rid of all of that stuff from out of your house.’ So we got rid of it, and I haven’t had peanut butter since he has been diagnosed,” Lisa Rutter said. “After that, we didn’t have any more incidents at all. It was amazing.”

Lisa admits she was clueless about food allergies and had no idea what an EpiPen was when she first learned of her son’s food allergy.

“I knew having a peanut and a nut allergy was bad, but I didn’t know anything about it,” she said.

But her ignorance didn’t last long.

Allergy advocacy
Soon after visiting the allergist, Lisa began searching for food allergy support groups in the area and discovered Food Allergic Children Education and Support of Michigan, of which she is now the co-leader. Founded in 2004 by a group of moms with food-allergic children, FACES of Michigan is a volunteer support group that serves the northeast suburbs of Detroit and is based in Macomb County.

After becoming involved with the group, she began searching for playgroups dedicated specifically for children with nut allergies, but came up short. In April of 2011, she decided to start her own group — which is now called the No Nuts Moms Group of Michigan — for children of all ages with food allergies and their parents. The group organizes play dates, public outings and moms’ nights out, in addition to serving as a support group and forum to spread allergy awareness.

Although the group got off to a slow start with just two members, it quickly grew following the launch of its Facebook page, and now includes more than 80 members across the state.

“It has just been amazing. People started saying, ‘I wish I had a playgroup’ and ‘I wish these were around earlier. My kid is 9 years old and they never had anyone to connect with. We wish we had this then, so they didn’t feel so alone.’ So I said why not? Why can’t you do it? And that’s when I started helping them set up their own playgroups in other states, which was not my intention, but I love it now,” Lisa said.

Just one year after she founded the No Nuts Moms Group of Michigan, she has helped form 16 other No Nuts Moms Groups in Ohio, Virginia, West Virginia, California, New York, Oregon, Colorado, New Jersey and Pennsylvania.

“It’s crazy how everything happened. I’ve made some lifelong friends through this, so even if it didn’t work out — I don’t think it will stop, but even if it came to an end — I would be thankful for the friends that I’ve made this far. It’s just been great. … I know so much (more) about peanut allergies now than I ever knew a year ago,” Lisa said.

One of those friends is Stephanie Barbaro of Clinton Township, who joined the No Nuts Moms Group of Michigan over Christmas break last year. Her youngest child, 3-year-old Mikey, was diagnosed with life-threatening allergies to peanuts, tree nuts, eggs and sunflower seeds after reacting to a small lick of frozen custard.

“I thought food allergies happened to other people,” Stephanie said. “I know it sounds dumb, but I never knew anyone who had one, and didn’t know what a reaction would look like. I didn’t know what was happening. I was terrified.”

Upon returning home from the allergist the day the diagnosis was confirmed, Stephanie remembers sobbing in husband Michael’s arms.

“It was pretty emotional, you know, to know that there is food out there that could kill our child. I did not know that this could happen to me,” she said.

Terrified of what could happen to her son, Stephanie said she and Mikey basically “lived in a bubble” at home for the next year, while her husband worked and their oldest daughter, 9-year-old Taylor, went to school.

“We didn’t leave the house, we didn’t go on play dates — if anybody wanted to see us, they would have to come to our house. This went on for over a year, until finally, my allergist said ‘You can’t do that, you have to join a support group,’” she said.

The next day, she joined The Food Allergy & Anaphylaxis Network, which led her to the No Nuts Moms Group of Michigan — a move she says changed her life.

“I met Lisa, and we had a nice play date. Her little boy came up to my little boy and he said ‘Hi Mikey’ and he showed him his medical alert necklace and he said ‘Look Mikey, I can’t have peanuts like you,’ and it made me feel warm because it made me feel like we’re not alone. … I felt, for once, he can play with other kids without me worrying about what they’re eating and worrying that food is going to get brought up and I’m going to go in my snail shell. It was the first time that I really felt, you know, that we can be normal. We can do this. And ever since then, it’s just been awesome.”

For more information about the No Nuts Moms Groups or to join, visit http://nonutsmomsgroup. weebly.com. Lisa Rutter and others from the No Nuts Moms Group of Michigan will be featured on ABC “Nightline” at 11:35 p.m. June 27 during a segment on peanut allergies.