HomeFrom the community: What we wish we’d known at first diagnosis with food allergies

From the community: What we wish we’d known at first diagnosis with food allergies

September 15, 2017

Charlene (on the left) and Michele

We’re delighted to bring you an interview with Charlene Siwak and Michele Jungwirth, co-chairs of the Saskatoon Anaphylaxis Support Group (SASG) on a subject of importance to so many of us. They both have children with food allergies.

What do you wish you’d known when your child was first diagnosed with food allergies?

We wish that we had known that we were not alone. We both felt very isolated and overwhelmed. If we could have met one other person or family with food allergies, it would have made a world of difference. This is one of the main reasons that we wanted to start a support group in Saskatoon.

Living with food allergies can be a real challenge. What have been some of the positive outcomes of living with food allergies? For example, have food allergies made you and/or your family stronger? Have you become an advocate for yourself or your child? Do you eat more healthily? Any other positive outcomes not listed here?

We would agree with all of the above. Food allergies do not just affect the person, but rather the entire family. Both of our families have become stronger because of this. We have both gained many skills in communicating clearly and establishing rapport with care givers/teachers, members of the community, for example. We are both strong advocates and welcome the opportunity to educate and help others. An additional positive outcome has been meeting other wonderful people and families who are affected by food allergies. Through our common concern, Michele and I have been able to support each other and start this support group!

What would you like restaurants to know about helping to keep your child safe when you dine out? What would make the dining experience most comfortable for you? 

In Saskatchewan, there should be mandatory training for all restaurant staff about food allergies and cross-contamination. Also, it would be very helpful if restaurants included their menus and ingredients online so that people could do some research before going to the restaurant.

 What books or other resources on managing food allergies have you found most helpful? 

Allergic Living magazine and the Ultimate Guidebook for Teens on the Food Allergy Canada website.

What are your top tips for travelling more safely with food allergies? 

For our support meeting in April, we actually held our first livestream on Facebook about this very topic. Please send us a friend request (Saskatoon Anaphylaxis Support Group) and then you can watch our video! We also had a tips sheet that we handed out at our first meeting but it was mainly information from the Food Allergy Canada website.

How do you manage anxiety around food allergies in yourself or your child? Do any techniques work best for you and/or them?

As parents, we have used different approaches. However, what we both agree on is that it really helps to talk about it with someone who understands. We also think that it is very important to be strong and to not put your own fears onto the kids. It always helped our kids to not pressure them in situations and let them take smaller steps to participate in new situations versus full participation or nothing.

When kids are involved in the decision-making, it gives them a sense of control. Our kids live with the daily stress of managing their allergies, which is sometimes very hard when they just want to be a carefree kid like their friends. Overall, what we both strongly agree on is that how kids manage anxiety changes depending on the age of the child. The strategies we use now, as both of our children are teenagers, are very different than the strategies we used when they were younger. There are some great resources (e.g., group counselling) offered in our community for helping kids and parents cope with anxiety.

What have you learned throughout your journey?

Kids are kids and people are people! We have to remember that allergies are only one part of who our children are and not the whole part. It is very important to try and keep this in perspective so that it does not consume your life and take away the joy of all the other wonderful things about your child and what they can do. Focus on the can and not the can’t.

What has been the hardest part about having a food allergy in the family?

Exclusion, for example, from celebrations at school, and the inability to be spontaneous. All excursions require planning and organization. The other hard part has been educating family, friends, and caregivers.

What advice would you give to someone newly diagnosed with a food allergy, or are having a difficult time managing food allergies?

Join a support group! You can do everything but just in a modified way. Stay positive for your child and family.

How do your kids with food allergies feel about having an allergy? How did you teach them about being responsible about their allergies?

This has changed greatly as they grow into adulthood. Both of our children have a “roll with it” attitude, as they have been forced to accept that things do not always go the way they want. This has made them very patient and mature beyond their years. One of our children has experienced emotions ranging from acceptance to irritation, frustration, anxiety, and anger. As our children become teenagers, we are slowly handing over responsibility for managing their allergies, which is a big transition for all of us!

Learn more about support groups, how to find one or set one up, visit our support group page.  For parents of children recently diagnosed with a food allergy, check out one of our upcoming webinars on the basics of managing food allergies.

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