Managing the Anxiety Often Associated with Food Allergies

Featured Clients,

April 5, 2011

On April 5, 2011, parents came to TheMotherhood to talk about their anxieties and fears in dealing with their children’s food allergies, and – most importantly – to give each other support and recognize they weren’t alone.

On hand to lead the Talk were Lori Sandler, founder of Divvies Bakery and author of The Divvies Bakery Cookbook, and clinical psychologist Dr. Jules Spotts, Ph.D.

As participant Gina Rau said, “It’s never easy, but there are so many ways to make it easier.” By sharing ideas and offering support, our conversation in TheMotherhood brought that sentiment to life!

Anxiety over Food Allergies

“Sometimes I think we as parents have just as much or even more anxiety than our kids do,” said participant Marla.

Several others agreed, although participant JulieTrone pointed out, “As my son has gotten older and more aware of the world around him he has shown more angst about having food allergies.”

“It’s a hard balance between emphasizing the importance of being safe, while keeping anxiety levels down,” sympathized co-host Christy Matte, Quirky Fusion.

Participant Gina Rau made the point that awareness, education and understanding is key. “My 7yr old used to get nervous about class parties or special events,” she commented. “Now that all the kids in his class know about his food restrictions, he’s more confident.”

Dealing with Stress and Anxiety

Preparation and knowledge will help you deal with stress.

Noted Marla, “I try to plan out as much as I can and communicate very clearly when we are with new crowds – preschool, friends’ houses, etc. A lot of folks are aware of food allergies, but many don’t realize that they really can be life threatening.”

“I try and always have safe snacks and food around him to try and avoid a reaction to begin with,” added co-host Voula Katsoris, Loukoumi.

But it can still be hard. “I feel like I’m constantly trying to educate people and asking people to wash their kids’ hands, or handing out wipes, etc,” said Jasperhart. “It can feel so overwhelming sometimes, because other kids’ parents can just let their kids go or drop them off at a birthday party with no worries.”

To avoid feeling overwhelmed in everyday situations, learn all you can about your child’s allergies. Co-host Sloane Miller, Allergic Girl, said, “Realistic medical information about the risks to you and your family will help you manage those risks, decrease irrational fears and navigate the world safely.”

And sometimes sweating it out can help. “As someone who spends a lot of time working out with parents, exercising helps them mentally and physically to deal with anxiety!” noted co-host Herman Walker, Give It Up Fitness.

“When my anxiety was truly hard to manage, I consulted with a therapist familiar with FA and families. I also started attending a support group,” said co-host Susan Weissman, Peanuts in Eden.

Finding a Therapist

“Dr. Spotts is available to do phone consultations. He is a fantastic resource and way to start,” said host Lori Sandler. “From there, I recommend you contact local support groups/friends with kids who have food allergies to see if they can recommend a great psychologist!”

Co-host Sloane Miller, Allergic Girl, said she is “also available for over the phone consultations.”

When you are looking for a therapist, you want to “ask about the emotional and anxiety components of having a food allergy. Indicate that you have this medically under control, and are looking for guidance and help in managing the larger familial and individual consequences for your child,” recommended host Dr. Jules Spotts. “Also, check with your medical people as to who they might refer as humanistically oriented therapists, not behavioral managers.”

In addition, http://www.aaaai.org and http://www.acaai.org and http://www.aafa.org have lists of board certified allergists nationally.

Allergies in School

It’s one thing when your child is at home, in an environment you can control. Sending him or her to school, though, can take a leap of faith.

“My daughter is shy about her allergy and doesn’t like to talk about it, so I had to make sure that I talked privately with her teachers to let them know about the allergy,” said co-host Clarissa Nassar, The Posh Parent. “I’d talk to the teacher and make sure she is aware of your concerns.”

http://youtu.be/yK1Jna8YjOU

“My son needed a ‘plan’ that he could follow to communicate since he is shy too,” added co-host Susan Weissman. “When he was less verbal he was even able to signal a teacher if had a question about allergies without attracting attention.”

Noted co-host Voula Katsoris, Loukoumi, “Our rule is that he is only to eat snacks that have been provided from home (same with lunch, of course). Also, I used to send in a box with acceptable snacks in it that had his name on it so if for some reason, there was an extra snack being given one day, the teacher would know what to do and my son would be able to have a treat as well.”

“The important thing to remember is to teach him that it is his allergy,” said co-host Carmen Staicer, Mom to the Screaming Masses. “It’s not the school’s allergy, and he will need to learn to navigate it.”

“I think it gets easier once you feel confident in the policies and procedures you have put into place with the school,” said participant Sandi Kornblum. “Work together with them to accomplish your goals.”

Allergies at Restaurants and Parties

“My daughter (6, with several food allergies) doesn’t eat any food that doesn’t come from home,” said participant lisaz. “She (or we) carries a lunchbox around with her to restaurants and parties and outings. When we leave home or she is watched by someone else, we prepare food for her to eat while we’re gone.”

Host Lori Sandler noted, “The only way to not have a reaction is by total avoidance of an allergen. If you are not sure what ingredients are in food, or how it is manufactured, it is not worth taking a chance.”

Inviting others to your house for a party is one way to control the food. “I try to have two get-togethers a year,” said co-host Kristin Beltaos, A Gift of Miles. “It only helps others understand AND my son has a marvelous time not having to ‘think’ about it for the moment.”

Building Your Child’s Confidence

Most participants acknowledged the importance of teaching their kids how to handle their allergy independently.

Host Lori Sandler emphasized a strategy of “listen and hear – acknowledge and respond when your child is self-advocating directly to you” to encourage that self-sufficiency in managing the allergy. “Teach your child how to advocate for herself. It starts in the home! This is a collaborative effort, which works best when embraced by the entire family. Parents need to be a unified front.”

“Don’t use the phrase ‘are you sure,’ which will almost certainly involve his feeling doubted,” added host Dr. Spotts. “Try, ‘tell me more about the feeling,’ or, ‘describe what you are feeling in more detail.’”

Dr. Spotts also recommended practicing “how to approach an adult for help. Discuss not only what to say, but how to say it! Critical that you give positive reinforcement, and be very sensitive when giving constructive criticism. Talk about how to deal with peers (supportive and unsupportive).”

Co-host Nick Katsoris agreed, “It is very important to discuss with your kids, let them express their feelings and then deal with their feelings so they know how to handle the situation in the best way possible. Open communication and letting them know that you are there to help them manage their allergies and assist with food alternatives is of utmost importance.”

“As early as possible, make sure your child understands his food allergies – unsafe ingredients, foods, reading labels, where medications are kept, never leave home without EpiPen, etc.,” said host Lori Sandler. “This will give him valuable information to utilize to help himself as well as others feel more in control.”

Getting Others to Understand

A number of participants said they had difficulty convincing others of the severity of their children’s allergies. Even family members tended to downplay the seriousness of exposure to an allergen.

“You have become an educator,” said co-host Kristin Beltaos, A Gift of Miles. “We have dealt with my son’s allergies for 4 years, and there are some people that sometimes just don’t get it. There will be people though, family or friends, that really do get it and you will gravitate toward them.”

“Repetition is necessary, in a way of conveying information, not anxiety,” commented host Dr. Jules Spotts. “Make clear to everyone that you are not making judgments about them, just continuing to reinforce the appropriate information.”

“And everyone learns differently,” said co-host Susan Weissman, Peanuts in Eden. “When educating people I try to think about what their best skill set is: My father is a good listener but I gave my mother-in-law a FAAN video to watch since she is more visual.”

“A lot of this is about demystification: the removal of mystery or confusion surrounding the topic of food allergies as it relates to your particular situation,” said host Lori Sandler. “Know which foods your child is allergic to; how to treat all types of reactions from hives to anaphylaxis. Explain food allergies (age appropriately) to all family members. Make sure everyone knows the action plan in the event of a severe allergic reaction.”

And when it comes to strangers in a public place who might unknowingly be exposing your child to his or her allergen, “You can’t expect other people to protect your child, but you can always ask,” said Christy Matte, Quirky Fusion.

Supporting Children without Allergies

If you have one child with allergies and others who don’t have allergies, remember to make them part of the discussion.

“Support family members (typically siblings) who do not have food allergies,” said host Dr. Spotts. “Give them an opportunity to express their feelings, opinions and concerns.”

Added host Lori Sandler, “When our oldest son, Adam, was 14 years old, he expressed how daunting the idea of possibly having to give Benjamin an EpiPen had become. At times Adam and Max felt resentful that they couldn’t have peanut butter and jelly sandwiches in our home … this was a very important discussion as it gave them a chance to be heard; gave us an opportunity to realize that we needed to make alone time with them to take a break from always dealing with food allergies as a family.”

http://youtu.be/BqLxBePEbFM

Dr. Spotts counseled, “Engage your kids – offer support by guiding them and modeling behavior.”

The “New Normal”

“Learning how to integrate food allergies into your child’s life (as well as your family’s and yours) takes patience and practice,” said host Lori Sandler.

But allergies don’t need to define a person. As host Dr. Spotts said, “Having a food allergy is one piece of the puzzle of self, and the puzzle of family. Your child is a regular person, with a food allergy.”

“I try so hard to make her feel ‘normal’ that I find myself going crazy,” said Hope M. Hill. “I pack a refrigerator every time we go out shopping, etc. Just in case.”

Co-host Anne-Marie Nichols, This Mama Cooks, replied, “It does become the ‘new normal.’ You should see all the stuff I pack for myself when I travel. My suitcase is filled with rice crackers and rice milk cartons.”

“‘New Normal’ is in fact a chapter in my upcoming book about living with FA,” said co-host Susan Weissmann, Peanuts in Eden. “And you know what? I LOVE our new normal because it’s ours and makes a unique and close family.”

Being Brave

Hosts Dr. Spotts and Lori Sandler had words of encouragement for parents of children with food allergies.

Said Dr. Spotts, “The goal is not to get rid of the anxiety (have it go away); the goal is to diminish the anxiety and then you can do the action (try the food, go to a sleepover, confront a mother who is serving an un-safe food and ask if there is a safe alternative, etc.) If you are so anxious, then it will be very difficult to feel brave and to act bravely. It’s possible to feel anxious and brave at the same time is a life principle, not just regarding foods.”

And Lori added, “Do your best to be optimistic! Family members are affected differently; and dynamics are ever changing based on age, timing of diagnosis, life circumstances. You WILL figure out what is best for your family; and yes, this may change … just work to keep one another on track! Today there are so many incredible resources from this wonderfully warm, supportive community (here we are at TheMotherhood, among many others!) available to help you Navigate Food Allergies. Make seeking support for yourself a priority if you need it!”

Q&A

What is a good age to teach children how and when to use an EpiPen? (from Vish)

I’ve let my daughter use expired pens on oranges for practice and to make her feel more comfortable about the real pen, but I still want an adult to be responsible for the injection, if necessary. (Tracy Mayer)

Every child is different. We gave Benjamin the Epi-Pen Trainer when he was 4 (I think) just so he would be familiar with it. He has known how to use it from a very young age, but didn’t give him the responsibility until he requested it around 10. This is very child and family specific. (Lori Sandler)

Talk with your allergist or pediatrician about this one. They’ll know what age it’s good to start practicing how to use it and being responsible enough to have it with him. (Anne-Marie Nichols)

Do you try to recreate things allergen friendly or just avoid things altogether? (from mommaoffour)

I try various substitutes to try and have what we would normally eat. Sometimes it turns out GREAT and sometimes hmmm not so great! (Kristin Beltaos)

I ask my child what he wants or is curious about. For example he wanted to know what Mac and Cheese tasted like but is allergic to milk and soy so I re-created it using crushed Tings (a corn snack) rice milk and olive oil. (Susan Weissman)

What age do you teach them that their allergies can cause them to be sick and how do you relay this message? (from Heather)

When Benjamin was first learning to talk, we introduced the word “ingredients” and the concept that eating foods he was allergic to would make him “very, very sick” (Lori Sandler)

My son loves to put the food boxes on the table and “practice.” He also loves to “check” us when shopping by re-reading. No matter how rushed I feel I always let him do that since it’s so empowering. (Susan Weissman)

Getting them involved in the kitchen when they are old enough is important too! I rarely ate out growing up just because we couldn’t afford it and it is much healthier. So, it’s important to teach them how to cook for themselves and pack a safe food bag when they are away from home too. (jgs)

My daughter, age 14, was diagnosed with severe nut allergy as a baby. Once she began to read we trained her to read all labels and to be her own advocate. She is careful with foods that are not packaged and will always err on the side of caution and not eat something. She will say it just isn’t worth it. (JGP)

Is there any need to be wary of putting my egg and nut allergic 1-year-old into a public shopping cart? I always wipe down the handles and sides with a wet wipe…is that enough? (from AbbeyM)

Try something like this … http://www.floppyseat.com/ (MrsGailP)

I carry my son who is also 1 in a backpack at the store, because it’s easier to shop. Or there are shopping cart covers you can buy. (Natalie)

I found that traveling on airplanes is hard; Delta, for instance, serves peanuts on all their flights. I also get nervous when I see all the nuts they sell at the airport for people to bring on the plane. How do you all deal with this? (from Barbra Fordyce)

I call the airline ahead of time so the flight attendants are aware of his allergy. I’ve heard that some airlines will create a buffer zone for the allergic party. I also wipe down all the surfaces my child might touch with a sani-wipe. (Andrea)

And sometimes that means our paying more to travel a different airline or to travel a couple of hours by car to catch a flight that doesn’t serve our city but is peanut-free. (Benita)

How do you manage food allergies while traveling? Do you carry everything with you? Do you only book a hotel with a kitchenette? (from Vish)

We call ahead and ask lots of questions!! Depending on the situation, we have traveled and packed everything. When Benjamin was younger, we always made sure there was a kitchenette! Before we even travel we make sure the restaurants and hotels can serve safe and delicious meals. I also make sure there is a hospital close by. (Lori Sandler)

I always find a Whole Foods or Kroger close to where we are going. I also request a fridge in our room and clean it as soon as we get there. (Liz Reynolds)

Do you have foods in your home that your allergic child cannot have? Or does EVERYONE avoid? (from cararolinson)

When my son was younger, we put smiley face stickers on foods that were safe for him. With 8 people in the house, there is always something that’s not safe for him, and I wanted him to be able to be comfortable that he was safe no matter where he went. (Carmen Staicer)

We avoid what our food allergic daughter cannot have for one reason; if there is any place she should feel safe and free to be herself, it should be in her own home. (Thanita)

It depends on your family’s dietary needs, how many food allergies your child has, and how contact-sensitive he/she is. (Amy)

Can I take my nut-allergic child to a baseball game? (from Susan)

At some of the major league ball parks there are nut free sections. Call your stadium’s box office to ask about it. (Anne-Marie Nichols)

There are peanut-free games now at a lot of stadiums. My parents take my son to one every year. The stadiums power-wash everything and don’t sell any food with peanuts in them. (Christy Matte)

Check with FAAN; they sponsor nut-free sections at stadiums throughout the season. My daughter went to her first baseball game last season thanks to FAAN. I would not risk taking her to a game if there wasn’t a nut free zone. (Benita)

Thank you to our amazing food allergy series host, Lori Sandler of Divvies Bakery, and clinical psychologist Dr. Jules Spotts, Ph.D!

Thanks also to our wonderful co-hosts today!

Kristin Beltaos, A Gift of Miles

Nick Katsoris, Loukoumi

Voula Katsoris, Loukoumi

Christy Matte, Quirky Fusion

Sloane Miller, Allergic Girl

Clarissa Nassar, The Posh Parent

Anne-Marie Nichols, This Mama Cooks! On a Diet

Carmen Staicer, Mom to the Screaming Masses

Herman Walker, Give It Up Fitness

Susan Weissman, Peanuts In Eden