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No nuts here
Posted By CHERYL CLOCK , STANDARD STAFF
He was three, set to enter junior kindergarten, when he had his first taste of peanut butter.
His father was making a peanut better and banana sandwich and offered the boy a bite.
Turns out, little Riley Raso didn't like it. He spit most of it out.
Within minutes, red blotches appeared over his face and around his mouth. And he kept pulling at his tongue.
Mom, Sherri, gave him some allergy relief medication. The symptoms went away. Curious, she brought it up during a visit with her family doctor the next day.
The doctor's suspicions were confirmed with a blood test. Riley was allergic to peanuts and tree nuts.
And if he ate any again, his reaction might be worse than a few red bumps.
He could die.
Riley, who is now 11, has a life-threatening allergy known as anaphylaxis. His eight-year-old sister, Sierra, has it as well.
Wherever they go, they wear a MedicAlert bracelet and carry an EpiPen, a device with a spring-loaded needle that administers a dose of epinephrine. It protects against anaphylactic shock, and buys time to get to the emergency department, should they ever ingest anything containing peanuts.
They each carry an EpiPen in a pouch, on a belt around their waist. Sierra has decorated her pouch with pretty sequins to make it more stylish.
After Riley was diagnosed, life revolved around reading food labels (every time, even on products that have been safe in the past), keeping their home peanut free, and balancing Riley's need to grow up like a regular kid who goes to school, plays with friends, and gets invited to birthday parties with the never-ending need to keep him safe in a world where peanuts, food made with peanut products and the words "may contain" are everywhere.
"It's always in the back of your head," says Sherri.
"It becomes a way of life in our house. But you always wonder, will other parents listen? Will they understand?
"You really don't know what it's like until it's in your own home."
This Saturday, the Welland mom will be one of the presenters at a conference in St. Catharines on anaphylaxis, asthma and allergies, called Knowledge for Living. It's being supported, in part, by Niagara Anaphylaxis Support and Knowledge, a non-profit group that serves people and families living with life-threatening allergies in the region.
The conference will bring together experts in fields including: research, food allergen labelling, human rights, risk management and emergency response.
A diagnosis of anaphylaxis can, at first, seem overwhelming, says Sherri.
Riley started junior kindergarten soon after his diagnosis. She spoke to his teacher, to ensure she knew how to use an EpiPen. And she got permission to show his class a cartoon video, Alexander the Elephant Goes to School, about an elephant with a food allergy. She explained how, even if Riley touched something that contained peanuts, it could make him very sick.
"His body doesn't like peanuts," she told his classmates. "It will make him very sick. Sick enough to go to the hospital."
But staying safe isn't as simple as avoiding peanuts and peanut butter. Nut products may be hidden in the small print of ingredient lists of products such as crackers and baked goods.
The food itself might not directly contain peanuts, but may have been contaminated by factory equipment that also processes food containing nuts.
And there's always a risk that residue from a classmate who has eaten a nut product could trigger a reaction. Maybe the oil off a child's finger touches his desk. Or the child touches Riley's pencil crayon and he puts it in his mouth. At his school, a note was sent home to parents, asking them not to send in any food with peanuts. Sherri could only hope they'd read it. (These days, the notes have to be signed and returned.)
The emotional burden children with food allergies carry can be huge.
At McMaster University, Susan Elliot, a professor in the School of Geography and Earth Science, and Nancy Fenton, a post-doctoral fellow, researched the impact that food allergies have on children at school. Their research was done through AllerGen, a national network that supports researchers trying to reduce the impact of allergic diseases. They will talk about managing risk at the conference.
They interviewed 10 children, 10 teenagers and their parents about the risks they are confronted with at school. Are they excluded, bullied or teased? Is the school environment safe? Do people around them such as teachers and other parents seem informed about food allergies?
The kids drew pictures of their experiences. One 15-year-old boy sketched a picture of himself running to escape a food fight in the cafeteria. Other kids drew pictures of imagined emergency situations.
What researchers learned will help kids to not only cope with a food allergy, but to adapt and become self-advocates, says Fenton.
In Ontario, legislation called Sabrina's Law came to be in 2006 and requires every school board to establish an anaphylaxis policy.
It's a step, but not good enough, says Maurice Brenner, a human rights specialist in Toronto and another presenter.
Why? While it deals with keeping children safe at school (things like taking steps to avoid cross contamination and requiring teachers to know how to use an EpiPen), it fails to guarantee that children will feel included.
Across Ontario, most schools are good at keeping kids with food allergies safe, says Brenner. Trouble is, some of those safety measures actually ostracize the students.
For example, some schools make children eat in a room by themselves, designate a special room just for the food allergy kids, or advise them to eat at home. Other schools have even suggested the children be home schooled, he says.
"It creates an environment where kids can be segregated, isolated and targeted because of misconceptions and stereotypical attitudes," he says.
A document with more teeth is the Ontario Human Rights Code. In it, food allergies are considered an invisible disability, and children are allowed "accommodations" to put them on even par with all the other kids. The code also says the people with the disability need to be part of process to develop a plan to accommodate them.
And here's an important distinction. It's not about giving kids special rights or special treatment.
That implies they then have an unfair advantage over other students, says Brenner.
That's not the case. In fact, an accommodation (like requiring teachers to monitor kids' lunches for allergens) simply ensures the kids have the "same rights as everyone else to be included in a safe environment," he says.
It's when people misunderstand, and take a what-about-my- rights attitude, that hostility erupts.
And it happens. Brenner has heard parents react by saying: "What about my kid's right to eat a peanut butter sandwich at school?"
A couple years ago, Brenner was involved in helping a group of children, all having deadly food allergies, file complaints with the Ontario Human Rights Commission against their school north of Toronto.
At issue was the sudden cancellation of a Shrove Tuesday pancake breakfast. The school couldn't ensure the product was free of deadly allergens.
Problem was, what school officials failed to explain was that they had gone ahead -- without consulting the kids with the food allergies or their parents -and found what they thought was a safe product.
Turns out, it wasn't.
What resulted was outrage among other students and parents. The kids with allergies were blamed and told, "It's your fault we lost pancake Tuesday," Brenner says.
"It got really vicious." By the next day it was so out of hand that the kids with allergies were assailed with peanuts and one portable was pelted with eggs.
Eventually, the problem was resolved through mediation. In fact, afterwards, the school organized a forum on human rights and developed an allergy-safe school plan.
Part of the plan included an important accommodation -- the teachers move around the classroom during lunchtime to monitor the food children have. If they see anything suspect, they tell the student, take it out of the class and notify the parent.
These days Brenner uses the school as a positive example.
Back in Welland, the Raso family has never encountered negative attitudes. Through all the years of school, playdates and birthday parties, everyone has been more than supportive, says Sherri.
When her children played at a friend's house, she taught the parents how to use an EpiPen. At birthday parties, she'd offer to stay if the parents weren't comfortable alone with her children.
She'd ask what food was being served at the party. And whatever it was -- pizza, chips, ice cream -- she'd have to do her own research to make sure it was safe. Often, though, the parents would say to her: tell me what they can have.
"You can't keep them in a bubble," she says.
"I have to let them grow.
"I have to teach them how to be independent."
cclock @ stcatharinesstandard.ca
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Symptoms of anaphylaxis
- Anaphylaxis is a serious allergic reaction that may cause death. Symptoms may appear in any order or combination.
- Face:Itchiness, redness, swelling of the face and tongue.
- Airway:Trouble breathing, swallowing or speaking, coughing.
- Stomach:Stomach pain, vomiting, diarrhea.
- Total body:Rash, itchiness, swelling, weakness, paleness, sense of doom, loss of consciousness.
- Source: Niagara Anaphylaxis Support and Knowledge
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WHAT:Knowledge for Living with Anaphylaxis, Asthma and Allergies. A conference that brings together experts who will talk about topics including: research, food allergen labeling in Canada, anaphylaxis and human rights, coping with the diagnosis, safe air travel, managing risk, allergy testing and emergency response.
WHERE:Bethany Community Church, 1388 Third St., St. Catharines.
WHEN:Saturday, Oct. 3, 8 a. m. to 5 p. m.
CONTACT:For information about costs and other details on how to register, visit Niagara Anaphylaxis Support and Knowledge at www.nask.ca and click on events for a conference brochure, or call Sherri Raso at 905-714-1514.
Article ID# 177221
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