Food Allergy Community of East Tennessee - FACET Advocate Blog

When Tragedy Strikes

12/2/2016

by Amanda Painter, South Chapter Coordinator

More often than we’d like to see, an anaphylaxis death is in the media. For someone with food allergies or caring for someone with food allergies, this can bring up a range of emotions. How do we process the death of someone we never met and didn’t know, yet this person has a profound impact on our lives? We remember their names, faces and stories.

As a mother of a child with food allergies and a food allergy educator, I can recite to you in detail what happened with many anaphylaxis fatalities over the past several years. But I don’t use the specifics of these stories to dwell on the thoughts of worst-case scenarios. I use them to teach others and to remind me to be vigilant with my child’s care. I encourage you to do the same with these stories.

Honor the memory of those we have lost. Don’t let their story end – use this opportunity to promote awareness and protect others.

I urge you to not let fear grow, instead grow in your preparedness. Now is a good time to focus on your daily routines and avoidance strategies. Have you become lax with something? Is there a situation that you have thought about addressing, but keep putting it off? Now is the time to speak up. Explain how to reduce risks and what is necessary to keep you or your child safe.

Ask questions. Specifically, ask productive questions that can be answered.

If you are not sure what symptoms are considered severe, talk to your doctor.

Understand the details of your Emergency Care Plan.

Know how and when to use epinephrine. Be confident. Have it on hand at all times. Always carry 2. Review with your child, friends, family, co-workers, teachers, etc. how to use it. Practice, practice, practice.

Know your risks and how to avoid them.

Love your kids. Teach them self-management. Encourage them and empower them.

Make our community stronger. Bond and make connections with others in the food allergy community. This can be via social media or those in your own town. Join a support group and find out how your local group works to raise awareness. Help your community be more allergy-aware and understand how to support those managing food allergies. You can be the person who makes a meaningful difference in someone else’s life.

Let go of the fear. Focusing on tragedies is not productive. Focus on prevention efforts and self-management. Concentrate on solutions. Put effort into controlling what you can.

Live in the present moment. Remember to live life. Don’t be paralyzed by fear. If the fear is overwhelming and you find yourself struggling, search for a healthy way to cope with it. Ask others for help. Practice self-care.

Create positive change. Find motivation in the tragedy of a precious life lost too soon. Give that life meaning and purpose.

How to Welcome a Guest with Food Allergies

11/10/2016

by Amanda Painter, South Chapter Coordinator

With the prevalence of food allergies increasing, many people now have a friend or extended family member with a food allergy. Many hosts want to be accommodating while entertaining, but often don’t know where to start. Here are some tips on how to make your home safe and welcoming to a guest with food allergies:

Start with communication
Discuss what you plan to serve for the meal and if the menu includes options that are safe for your guest. Let your guest guide you with what will or won’t work for them.

Ask questions if you are unsure of something. We like hearing questions!

If your guest is comfortable with you preparing food for them:

Be sure you understand cross contact and how to prevent accidental contact with allergens. Trace amounts can cause a reaction.
Know how to read labels. Ask your guest what brands they trust. Either keep the packages for their review or take a picture and send it to them to look at before you prepare the meal.

If your guest isn’t comfortable with food prepared by others:

Don’t be offended and respect their boundaries. Don’t try to push or persuade someone to consume food they are not confident about. Safety is the priority.

Don’t make assumptions
Only the individual (or parent) can make the decision if food is allergen-free for them. Don’t assume that every “allergy-friendly” product is safe.

Don’t make “surprises”
Once you have shared your menu with the guest, stick to it. If you have any additions, let them know in advance. Don’t surprise them when they arrive with foods not on the previously discussed menu. This is especially important if the guest with food allergies is a child. If the food isn’t safe, it could cause disappointment for the child, if he/she doesn’t have a safe alternative available.

Special considerations for young children:

Contain the allergens - If you have a young guest that is allergic to some of the food you plan to serve, keep those foods contained to specific rooms (i.e. kitchen and dining room). This allows the child a safe place to play without the risk of food crumbs being in the room.
Be sure to pick up any candy bowls that may be within reach of little hands.
Have wipes available for messy hands and faces of other children.
Encourage hand washing for everyone. Inform your other guests of how they can help keep the child safe. Remind everyone to never feed a child without consulting the parents.

Pets:
Pet food can contain allergens. Also, dogs that tend to lick a lot may need to stay away from young children who could react to their saliva.

Be aware that some hand soaps contain allergens. “Milk and honey” varieties are popular, as well as, nut varieties, especially during fall and winter holidays.

Know that some guests may also have asthma or environmental allergies. Pets, burning candles, indoor fireplaces, etc., may trigger symptoms.

Managing food allergies can be isolating. When a friend or family member puts forth the extra effort to ensure safety and inclusion, it makes a positive impact on those managing food allergies. Don’t be afraid to invite someone with food allergies to your home. With communication and planning, it can be an enjoyable experience for everyone.

For those managing food allergies, read these tips on how to Navigate the Holidays successfully.

What other suggestions do you have? Share them with us!

It's Teal Pumpkin Time!

10/3/2016

by Amanda Painter, South Chapter Coordinator

Teal Pumpkin season is upon us!

Thanks to media coverage, national promotion and now being able to purchase teal pumpkins at craft stores, food allergy awareness is increasing. Despite the growing popularity of the project, I often hear from many parents each year “we didn’t see any teal pumpkins when trick-or-treating.”

So, how do we, food allergy families and advocates, get others to participate? Remember that we are the driving force for this project. Tell people about it!

Often our assumption is that those without food allergies see all the media coverage and are encouraged to do it themselves. While this does happen at times, it's usually a personal connection that will motivate someone to participate in the project.

Here are some suggestions to encourage those in your neighborhood and community to take part in the Teal Pumpkin Project.

Start with your family, closest friends and those that love your child. Those that recognize the challenges your child faces on a daily basis should be more than happy to participate in something that brings your child joy.

Print teal pumpkin flyers and give them out to neighbors. Include a list of suggested items they could hand out instead of candy. Do this face to face, or share it electronically through your online neighborhood websites/networks.

Use social media. Tell others why the Teal Pumpkin Project is important and how easy it is to show a little compassion for others.

School: talk to your child’s teacher, party organizers, PTO/PTA, etc. Suggest the TPP as an inclusive addition to the traditional celebration.

Community and church events: Think about what Halloween events take place in your city. Share the TPP with the planners (or better yet, offer to help with the planning). Church and other community events can be very receptive to finding ways to include all children in their event. Let the organizers know that participating in the TPP may increase the media coverage of their event. It’s a great marketing tool that can allow them to stand out from all the other Halloween activities.

If you haven’t seen any local media covering TPP, contact them yourself. Share your Teal Pumpkin story with them.

As with any group of concerned people, we can make a difference when we all pitch in. Help promote compassion and understanding during this Halloween season.

What other strategies have you used to encourage others to participate in the Teal Pumpkin Project?

Outgrowing

9/1/2016

by Amanda Painter, South Chapter Coordinator

I recently saw on my Facebook “Memories” that 6 years ago was my daughter’s first allergist appointment. I wrote about her allergy diagnosis followed by “let’s hope she outgrows soon.” That was my focus for a while. When would she outgrow, maybe not all of her allergens, but some of them, right? The statistics at the time were very much in her favor. Then as the days and months passed, new foods were added to her avoid list. Then the years passed, and I learned that focusing on something beyond my control wasn’t productive. It didn’t help my daughter with her day-to-day living.

I often hear from parents and grandparents of young children with a new food allergy diagnosis talk about the hopes and goals of outgrowing. They research the numbers in the studies and can quote the statistics. They spend lots of time and energy focusing when this (hopefully short) chapter may be over.

When given a diagnosis or situation that is less than favorable, it’s natural to think about when it will possibly end. When will this phase be over? Surely, we can just tough it out for a year, or two, or three; then everything will be fine and go back to normal.

What are the odds of outgrowing?
Studies show that milk, egg and soy are more likely to be outgrown. While peanuts, tree nuts, fish and shellfish are likely to be life-long allergies. Other allergens fall somewhere in the middle. There have been many studies on the likelihood of outgrowing. I was once told that milk and eggs were almost always outgrown by the time the child started school. Newer studies show that children are holding on to the allergy longer into middle and even high school.

I could fill this blog with numbers, statistics and percentages, but sharing data isn’t my motivation for writing this. I want to share my advice to not focus on the possibility of outgrowing. We have children that could benefit greatly from us focusing on skills and knowledge that will help them today.

Will my daughter outgrow? Maybe. Maybe not. It’s highly unlikely to outgrow all of her allergies. But the bottom line is she’s not a statistic (and neither is your child). She’s a child facing a challenge. A child with a heavy weight on her shoulders. Instead of focusing, wishing and dreaming for her to be a number in the favorable piece of a pie chart, I will teach her skills to manage her challenges. I will help her carry her heavy load so she may stand tall and confident. I will teach her that we all have challenges. Food allergies are hers. Don’t be ashamed of it or live with the mindset that it is only temporary. Take care of yourself, be aware of what you put in your body, always keep your epinephrine within reach, and most importantly live your life.

I have discussed with her the slight possibility of outgrowing her allergies, and this chance is the reason we continue to do annual testing. But we don’t have this conversation often. If she had consistently heard “she should outgrow milk by age 3 or 5,” she would have fully expected that to happen and would have been significantly disappointed when it didn’t happen. Instead, I focus on talking to her about the food she can eat and how to avoid what she can’t. I encourage her not to look at food as an enemy, but as vital nourishment to her growing body (with a few exceptions)

Remember your children hear what you say. Be intentional in what you communicate to them and about them in their presence regarding their food allergies. Stay positive, yet realistic.

While I still hold on to hope, I don’t dwell on thoughts of “once she outgrows….”. I try to remain optimistic as we await test results each year. The phone call comes. Our allergist tells me to “continue doing what you’re doing.” On the surface that sounds like simple orders to continue to avoid milk, peanut, tree nut, sesame and mustard. But he means more than that. I need to continue to protect her, prepare her and support her.

While this annual conversation includes some disappointment; I feel that it has lessened over the years. With each year that passes my child grows with her self-management skills. She is not holding onto a “when I outgrow” dream in her head. She knows nothing different. This is her normal.

When we get stuck in dreams and fantasies, we forget that there is living to do. Learning to do. Teaching to do. I encourage you to focus on the here and now, not “if only” and “when”. Today, we are managing food allergies. If the day of outgrowing does come, we will celebrate (likely with pizza and ice cream). If it doesn’t come, we’ll still have celebrations (with Daiya pizza and coconut milk ice cream). I’ll teach my child that it’s not the ingredients in the celebratory food that matter. What is important is learning to manage her food allergies confidently and to love life despite her restrictions.

You're Invited! (Now what?!)

7/7/2016

by Amanda Painter, South Chapter Coordinator

One of the most frequently asked questions I hear from parents of young kids with food allergies is “Should we go to the birthday party?”

In most cases, my response is “Yes! You can do it.” (Depending on the location, there may be some that are not safe. Be sure you know your risk factors and what to avoid.) My "Yes" often gets the responses of, "How can we do that?" or "I'd rather just keep my child at home."

It takes some work, planning and communication but you can make it happen. Here are some tips for how to handle a birthday party.

Begin the conversation with education, not expectations.
Think of this as an opportunity to educate someone else about food allergies. Speak with the host and let them know your child would like to attend. Then briefly talk a bit about food allergies. This education doesn’t mean explaining all the details about labeling laws, skin tests vs. RAST tests, etc. This information can be about how to offer safe participation for your child for a couple of hours: clean hands, the basics of cross contact, the need for having epinephrine accessible and an adult trained to administer there at all times. This conversation should also focus on how you will assist and provide for your child to participate. Explain that you do not expect all the party food to be safe for your child. Instead, your child will bring their own food that is safe for them.

When you speak with the host, ask what food they plan to serve. When will the food be served? Beginning or end? Or out the entire time? Take this opportunity to educate about how serving food at a designated time will keep your child safe, as opposed to having a free for all buffet for two hours.

Explain the importance of hand washing/wiping. Offer to bring wipes to help clean messy hands and faces.

Help while you're there! Yes, supervising your child is the priority. But if you are able, offer a hand to the host. They will appreciate your help. Assisting the host will also help your child not feel that your only reason for being there is to hover over them.

What if the host isn’t receptive to what you have to say? Or not willing to have kids wash hands? I have personally never found this to be the case, but it could happen! Would you want your child to spend time in a home and with people that are not willing to do a few small prevention steps? I wouldn’t. Unfortunately, there are people who don’t “get it” and have no desire to figure it out. Sometimes we just have to walk away.

As with anything, it gets easier with time.
Start small, if this helps you. If your child is very young and the food will be served at the end, you could leave before the cake comes out. Build on this until you are more comfortable with your child staying for the entire party.

Older children probably won't want mom or dad hanging around the party with them. Educating the host parent will take more work in this situation. Treat this like you would when leaving your child anywhere else. Ask if the host is willing to learn how and when to use an epinephrine auto-injector. Take the time to sit down with them and go over instructions for caring for your child.

Lastly, don't miss this opportunity to educate your child. Their self-management skills are an important part of keeping safe when around others eating their allergens. Discuss with your child before the party what your plan is. Explain that allergens will be there. Show your child any items/rooms/areas to avoid once they arrive at the party. Assure them that they will still have a special treat (brought from home); it just may look a little different than what the other children are eating. Remind them to only accept food from you (or other designated adult). Role-play what they should say to their friends if they ask questions.

Living with food allergies takes additional work and planning. We all know this. But remember the LIVING part of it. Our kids want to go to parties and celebrate with their friends. Put forth the effort to find a way for your child to participate and educate others along the way. You will also build your child’s self-management skills that will help them navigate social situations when they are older.

Teens and Young Adults Making a Positive Impact: Must Read Resources

6/1/2016

by Amanda Painter, South Chapter Coordinator

I wrote before about food allergy moms making a positive impact with the companies they founded. You can read that blog here. For this blog post, I want to highlight young people who are making a positive impact (and also happen to have food allergies). These teens have gone above and beyond everyday management of their food allergies and developed resources that benefit the food allergy community.

First, I would like to share with you, Morgan Smith. Morgan (currently a college sophomore) has written three e-books:Traveling Tips for Teens with Food Allergies, The College Survival Guide for Teens with Food Allergies and Morgan's Corner Collection: A History of Living with Food Allergies. Each of these books is a must read!

Traveling Tips for Teens with Food Allergies provides step-by-step guidance for trip preparation that empowers teens to be in control. The planning tips in this book include everything from choosing an airline to outlining where to find meals. Morgan shares ideas to help ease anxiety about traveling, and checklists to make the entire process thorough and seamless. Morgan also shares snapshots of his travels; the successful parts, and the ones where he had to troubleshoot on his own due to a change in plans.

The College Survival Guide for Teens with Food Allergies is an absolute must for teens heading to college soon (and a great resource for their parents too). College selection is one of the most important choices an individual makes in their life. When you add managing food allergies to the mix, there are many more issues and items to contemplate. Morgan shares the steps he took to decide on the college that was right for him. This survival guide suggests what to consider when examining housing and kitchen accessibility, what accommodations to request and the process for doing so.

Morgan stresses the importance of personal preparedness and covers social situations that need consideration, including dating, roommates and parties. The book gives us a glimpse into his day-to-day life; that is of great importance for both teens and their parents. It will help assist in discussions and preparedness on how to manage certain situations.

Parents will be glad to know that Morgan also reminds the readers that they need to check in with their parents!

Morgan's Corner Collection: A History of Living with Food Allergies is a documentation of Morgan's journey. In these pages, you will find Morgan's perspective and advice on managing food allergies from elementary school to traveling abroad in college. Topics range from dealing with teasing/bullying to managing holidays and staying safe at school.

Morgan is clearly living and thriving while managing food allergies. He is a remarkable example to others on how food allergies shouldn't hold you back. With proper planning and preparedness, you can follow your dreams and experience all that life has to offer.

You can purchase Morgan's e-book and read more about him on his website: Morgan's New Corner.

I can't write about Morgan without mentioning his parents. Nicole and Robert Smith set an excellent example for Morgan (and his sister). The Smiths are creators of AllergicChild.com. I encourage you to visit this website. It is an exceptional resource for those managing food allergies.

Next on the list is Cyrus Moassesi. Cyrus (currently a college-bound high school senior) is the creator of Food Allergy IceBreaker. This site provides talking points (and many other resources) for individuals that do not have food allergies but are affected by them. He covers many situations from play dates with little ones to peer-to-peer teen conversations. It can be challenging and awkward to ask others about their food allergies. By using these icebreaker suggestions, individuals show that they are interested in learning how to support someone with food allergies. Cyrus has many other accomplishments for his young age. You can read more about those on his website.

I also must add a couple of lines about Cyrus' mother, Caroline Moassesi. Caroline is a fierce food allergy and asthma advocate, setting a fantastic example not only for Cyrus but other advocates like me. Her passion is inspiring. I recommend checking out her Grateful Foodie blog.

My last must-read resource developed by a teenager is the book: Living with Life-Threatening Food Allergies: A Teenager's Guide to Doing it Well. Elisa Stavola wrote her book while in high school. This guidebook is full of practical advice on handling everything high school has to offer. From dating to sports, Elisa shares her tips and personal experiences, encouraging readers to be in control of their food allergy management. You can purchase her book on Amazon here.

Each of these individuals is an impressive example of how to make a positive impact. They are inspiring a community with the resources they share. I encourage you to check out their resources to assist you or those you know in the food allergy journey.

These individuals also set a wonderful example of self-management and self-advocacy skills. I want to take this time to emphasize how vital it is to teach children at a young age to self-manage and self-advocate. Building these skills in children at an early age will allow a successful high-school and college experience (and the rest of their lives). You will not always be with your child to navigate their journey for them. Read more here about teaching self-management.

I asked Morgan Smith to share a few words with our readers about his journey. This is what he had to share:

"Food allergies are entirely manageable. It's a mix of planning and self-advocacy: planning will help set-up the structures you need to succeed at school, on trips, and elsewhere in life, but self-advocacy will assure that you will always remain safe. It's important to never be afraid to speak up about your food allergies and voice your concerns with friends and strangers alike. People are a lot nicer and accommodating than you may think! Growing up with food allergies is just a long journey to develop these skills and, to me, life with food allergies is no different than life with brown hair or blue eyes - it's a fact of life. It's always better to have fun in the meantime!"
-Morgan Smith

Again, excellent advice. Be sure your child (or yourself) is still having fun while confidently managing their food allergies, and utilize the above resources to assist in your journey!

Disclaimer: FACET has not been paid to recommend these resources.

Why You Need a Support Group

5/2/2016

by Amanda Painter, South Chapter Coordinator

Why do you need a support group?

There is a bit of a stigma associated with support groups. The thought of attending a meeting full of strangers can make an already anxious person feel incredibly uncomfortable. Some may question what happens behind these closed doors. Will I be put on the spot? Do I have to share? I'm not comfortable talking in front of others.

Let me give you a glimpse into what happens behind those doors and why you should join us.

You'll learn something. The topic of food allergies is ever-changing. Join us to stay up to date on research, products, trends and more. We share recommendations for restaurants, recipes, epinephrine holders, vacation spots and favorite products.

You'll make friends. And the best thing about these friends is that they "get it". No having to explain how grocery shopping is difficult or why large family potlucks stress you out. They already understand. Exhausted from staying up all night trying to make the cake perfect? They have been there and can share some tips to make it easier next time. These friendships will move beyond the meetings. You'll have play dates, send messages with recipes and share encouragement.

Meetings are a safe place. You can complain about your extended family that doesn't get it. You have the freedom to say whatever is on your mind.

We want you to talk about food allergies. Sometimes those around us may think food allergies are always our conversation topic. Sometimes we feel that we are overburdening others with our food allergy anxieties and fears. Being able to be in a room where food allergies are the discussion topic will help you direct your food allergy questions/concerns. Of course, you are also welcome to just sit and listen. Sharing is not required.

You're not alone. Food allergies are isolating. When we come together as a group, we decrease the sense of isolation. Participating in a group allows us to see and talk to others, so we know we are not completely alone.

Empower yourself to manage confidently. Learn practical management tips for how to communicate with your child's school and how to teach your child to self-manage. Increase your skill set for problem-solving and coping.

I hear from many people "I don't need a support group. We've been managing for a long time, and we're fine." Guess what? The support group needs you.

Why does the support group need you?

Do you remember that ton of bricks that hit you with your/your child's diagnosis?

Recall the confusion leaving the allergist office with a prescription for epinephrine?

Can you still feel the fear and the tears that came after grocery shopping and being scared that you will purchase something that could harm your child?

Someone else feels that way. Help them stand confidently. Reassure them that they can manage this.

Were you ever alone in this journey? Did you need someone just to listen? Be that for someone else. Make this journey a little easier for them.

Think about all of the challenges you've already faced and conquered. Someone in your local support group will encounter them soon and needs your encouragement to do so.

When you help someone else manage food allergies, you realize how far you have come.

As a support group facilitator, I get more out of these meetings than I ever thought I would. Listening and helping others continues to help me in my family's food allergy journey.

Join us for a meeting. We share our frustrations and tears. We share our successes and laughter. The most important thing is that we do it together.

Food Allergy Managment: Non Top 8 Allergens

4/1/2016

by Amanda Painter, South Chapter Coordinator

Managing food allergies is challenging. Those of you doing this on a daily basis know that’s probably an understatement. But when you are managing an uncommon allergy much more work is added to avoid the allergen successfully. Everyone has heard of a peanut allergy. Peanut allergies tend to hog the spotlight. Move on to egg, shellfish or some of the other "common" allergies and most people still recognize that those are allergens. Yet, say that you're allergic to mustard and they will likely have a very perplexed look on their face.

Currently in the U.S., the FDA states that milk, egg, soy, wheat, peanut, tree nut, fish and shellfish are the food allergies reported most frequently. These are also commonly referred to as the “Top 8.” According to the FDA, these 8 foods account for 90% of reactions in the U.S. (To my knowledge, that statistic is 12-15 years old. I'm very curious if the numbers today are the same.)

While the above may cover the majority, it does not cover all food allergies. More than 170 foods are known to cause allergic reactions. That's over 160 not considered "common." These offending foods can be seeds (sesame, flax, sunflower, etc.), spices (i.e. garlic, cinnamon, cumin), meat, gelatin, corn, even fruits and vegetables.

Those managing food allergies know that there are people who still refuse to believe that eating the wrong food could cause a fatality. When said food allergy is something more unusual, the amount of skepticism grows. I've heard people (when trying to understand our situation) attempt to rank my child's allergies in order of importance (or severity), typically starting with the assumption that the more common allergens are more severe. There is a presumption that we work harder to avoid a PB&J than we would a corn dog covered in mustard. The reality is that both pose a hazard for my child. It's vital to understand that any food has the potential to cause life-threatening anaphylaxis… not only the dreaded peanut.

Some allergens that seem uncommon in the U.S. are more widespread in other countries. The most prevalent food allergies vary worldwide. Some countries consider more allergens a priority than the U.S. does, such as Canada’s recognition of mustard and sesame as common allergens. The European Union has a longer list that also includes celery, lupin, and others.

For those of us in the U.S., we can only count on the Top 8 to be labeled per the Food Allergen Labeling and Consumer Protection Act. FALCPA states that ingredient statements must list any Top 8 allergens by their common name. Have you seen an ingredient label that states "natural flavors” or “spices?” If you have a non-Top 8 allergy, it could be hiding there. Companies need to be contacted to ensure your allergen isn't an ingredient and determine if there is a risk of cross contact.
It is important to note that even when avoiding a Top 8 allergen, cross contact is not required to be listed on the ingredient label. You need to know the company's policy on allergen control, cleaning, testing and labeling. Visit our website for more information on understanding the limitations of food labels.

A tip for when you contact a manufacturer to ask about natural flavors or spices: some companies will be reluctant to give you the entire list of what this contains. Instead, ask specifically, "Does this contain garlic or onion?" You will likely receive a clearer answer with this approach. Do know that some companies will still refuse to give you this information stating that the recipe is proprietary information? (In my opinion, any company that has a policy of this is not worth my time.)

It’s vital to educate yourself on what foods are considered high-risk for your allergen. The average person does not think much about what goes into their food. Unless someone has an interest in cooking and food or has worked in the food industry, they may not realize that most pickled foods contain mustard. Most people associate cinnamon with dessert, but did you know that many dry rubs for meat often contain cinnamon? Corn can creep into many processed foods you would never imagine. Finding bread made in a facility without sesame seeds is rare.

Even once you become well-versed in the foods that typically contain your allergen, you can't let your guard down around foods that are usually safe. Many cooks may use a "pinch of this" as a secret ingredient in a dish. Always be sure you ask the right questions to confirm food is safe for you.

I hear from many people with uncommon allergies, asking for advice. Sometimes I feel that they are looking for a magic solution to make it easier. A way to simplify it. Something that they have possibly been missing. Unfortunately, I have no simple solution. The reality is, managing an uncommon allergy is complex. It comes down to finding brands and products that you trust, asking a lot of questions and knowing what is in your food. For my family, it means cooking most meals from scratch at home.

One piece of advice I have is to connect with others managing the same allergies. For those that utilize Facebook, there are several “groups” for managing allergies (a list is below). Also, KFA’s online community has forums for some uncommon allergies, such as sesame, corn, mustard, garlic & onion. While these groups won’t give you all the answers, these connections can support you. You can share recipes and get food recommendations that may be safe for your allergen set (I do recommend that you always do your research and contact the manufacturer). But knowing what brands other people use serves as an excellent starting point that will cut down on your time spent researching.

What non-Top 8 allergen are you avoiding? What tips do you have for managing?

Sesame: The number of people allergic to sesame is growing. There has been a push to add it to the list of top allergens in the U.S. You can find more information here. FARE recently covered the topic of sesame in a webinar that can be viewed here.

Here are some links that may be useful:
http://www.foodallergy.org/allergens/other-allergens
http://www.kidswithfoodallergies.org/page/natural-flavoring-can-contain-food-allergens.aspx
http://www.livecornfree.com
http://www.neocate.com/blog/food-allergies-around-the-world/
http://allergence.snacksafely.com/product/categories

Facebook Groups:
Mustard, cumin, flax, poppy, sunflower and other seed allergy.
Sesame Allergy Information and awareness
Corn Allergy & Intolerance
Garlic Allergy/Intolerance
Allium Allergy: Garlic, Onion & More
Onion Allergy/Intolerance

Teaching Children to Self-Manage

3/1/2016

by Amanda Painter, South Chapter Coordinator

Parents of children with food allergies spend a vast amount of time protecting their kids through many essential prevention steps: reading labels, contacting manufacturers, extra time cooking from scratch, additional meetings at schools, training soccer coaches and ballet teachers, etc. Often we get so consumed with our job as a protector; we forget our job as a teacher. It is critical that we not forget this, and work to make it a priority every day.

Children are never too young to start learning about their allergies (and it’s never too late to start). What we teach them through our conversations, and more importantly by the example we set, will help kids learn to protect themselves. As much as we don't want to think about it at times, we will not always be there to protect them. We need to prepare them for this time.

What skills and behaviors do kids managing food allergies need and how do we teach them?

Routine
The number one tip I have for teaching kids to self-manage is routine and structure. This comes easy to some and can be challenging for others depending on personality type. When you have consistent routines in all aspects of life, not only food allergy management, it helps make the food allergy management become a habit. For example, establish a routine that your child does every time they come home; take off shoes, put epinephrine auto-injector (EAI) in designated place* and wash hands. If you assist or remind your child to do this every time he/she comes home, it will become a habit. Soon it will be done without a constant reminder from you.

*I highly recommend having one designated place specifically for your child’s EAI near the door. This will help as a visual reminder and won't leave you searching the house trying to find it before leaving (or trying to find it during an emergency).

Avoidance
We need to teach children with food allergies how to reduce risks and prevent reactions. The foundation for this can start with the very basics of hand washing and why it’s important. Role-play with saying “No thank you. I have food allergies”. Yes, even when they are just able to start talking. Your toddler/preschooler will surprise you one day and refuse food from someone, or stop to ask you first. It will be a proud moment that most parents don’t understand, but will likely bring tears of joy to your eyes.

Next comes identifying allergens. Begin this at a very young age too. Start with teaching your child to name all of his/her allergies. Then progressing to visually recognizing the allergens. A few suggestions on how to teach this is to use play food in toy kitchens, pick out allergens in magazine pictures, or use flash cards. Utilize trips to the grocery store as an opportunity to point out safe and unsafe foods. When teaching my daughter, I would pick her up and hold her (at a safe distance) over bulk bins of nuts to show her what the different types look like.

Build on allergen recognition to include label reading with working towards understanding labeling laws, their limitations and how to contact manufacturers to ask questions about cross contact with allergens.

Who can be trusted to provide safe food? This knowledge is significant for children. Many parents teach their kids not to take candy from strangers. Parents of kids with food allergies sometimes have to teach their kids not to take food from people they know, possibly even family members and friends. Understanding who to trust and not trust can be challenging, but continuous communication with your child will help clarify any confusion.

Children need to be taught how to assess risk. Avoidance of high-risk situations and foods is a must. Risk can be reduced in other situations. It’s imperative to emotional health that situations not be avoided purely due to anxiety though. (You can read more about risk in another blog here.)

The final piece in avoidance is kids being able to do it all on their own. Can the child safely choose a restaurant, call ahead and ask the right questions, choose a low-risk item from the menu and effectively communicate with the restaurant staff? Is the child able to select safe foods at the grocery store and prepare a meal? These are vital skills that children with food allergies must learn and practice regularly before leaving home.

Preparedness
Even with the best avoidance skills and prevention steps, a mistake can still happen. We must teach children to prepare for these emergencies at all times.

Start at a young age to teach children what it may feel like to have an allergic reaction. Of course, this needs to be done in an age-appropriate manner. Convey the importance of reporting symptoms and speaking up if they don’t feel well. Rehearse with your child exactly what should be said, such as “I’m having a reaction. Please help me” or “Help me. I need my EpiPen (or other device)”. When children use more specific language regarding their reaction, others will be more likely to take them seriously and rapidly get help. The above statements will likely receive a more urgent response than “My tummy hurts” or “My throat is scratchy”.

Young kids with food allergies need to be aware of their epinephrine auto-injector (EAI). Begin simply with the child seeing the bag or carrier that holds the EAI every day, understanding not to leave it at home and it is NEVER left in the car. As children grow, the responsibility needs to be transitioned to them for getting their EAI before leaving the house and then putting it in the designated place when returning home.

Self-carrying their medication is the next phase leading up to self-administering. Please know that self-carrying can happen long before your child is ready for self-administering. And self-carrying can be a gradual process with many steps along the way. In my opinion, I feel that the slow transition to self-carry before the self-administering stage is of vital importance. This phase is when children can learn the routine of always having their EAI with them. They understand that this is part of their responsibility (while still being closely supervised by adults). I am an advocate for EAI being in the classroom with students and carried from class to class. (EAI should always be easily accessible. An office on the other side of the school is not easily accessible.) Elementary students who are responsible for carrying their EAI to art class and the cafeteria will be much more aware and conscious of their food allergies, and will be much less likely to turn into the teens that leave their EAI at home. This step in learning self-management is crucial to children developing healthy preparedness habits. I also feel that the added benefit of young kids keeping their EAI with them at all times is that school staff (or any adult in other situations) is also more aware and conscious of their food allergies due to the visual reminder of their EAI.

Many parents allow their child’s EAI to be kept in the nurse’s office at school. My first concern about this is if the kids have their EAI with them on the way to and from school. Often parents, especially moms, will say that they keep extra EAI in their purse. While this method does have EAI available to the child at all times, it teaches them nothing. Parents are protecting in this scenario but not teaching. Preschool and young elementary kids can begin taking some responsibility for ensuring their EAI is with them (with adult oversight). If your son is developmentally capable enough to comply with your request of “It’s time to leave. Go put your shoes on.” Then he is also capable of putting his EAI in his backpack before heading out the door.

The self-administering step is not one to take lightly. The child must exhibit not only knowledge of how to use an EAI but, more importantly, confidence of when and how to administer.

After learning how to self-administer and being confident of when to do it, the final step in self-management preparedness is the child being able to teach others. Children need to be able to demonstrate proper use of their EAI, to thoroughly explain anaphylaxis symptoms, what qualifies as necessary to treat, and to answer any questions others may have.

What age is appropriate?
Remember that children develop at different rates. Giving a child responsibility for managing his/her allergies will not happen at the same time for all children. There is not a one-size-fits-all timeline for food allergy self-management. Ask your child’s allergist for help when deciding what responsibilities your child is or isn’t developmentally ready to handle.

Emotional and Social Skills
As parents of children with food allergies, we are very aware of the emotional and social aspects of managing food allergies. We need to be sure that we equip our children to handle these issues in a healthy manner.

Create a circle of support for your child and teach him/her to go to these individuals for help. There will likely be a point in time in your child's preteen or teen years that he/she doesn't want to talk to you about problems. Be sure children have others they can speak to that fully understand their food allergies, their restrictions and the importance of healthy choices.

Teach children how to express their emotions in a productive manner. Managing stress and anxiety is incredibly important when also managing food allergies. Communicate about the importance of self-care and encourage kids to practice their self-care regularly.

Work towards the goal of your child having the knowledge and confidence to explain his/her allergies and safety needs in social situations.

Encourage kids to have an active role in managing their allergies.
Include children in discussions with their allergist and have them prepare questions ahead of time to discuss. When age-appropriate, include children in school meetings regarding their accommodation plans.

Let children decide the logistics of certain situations. Don’t plan or resolve everything for them. Instead, observe as they solve problems for themselves. For example, have your child order at a restaurant and speak to the manager/chef. You can be there to supervise or intervene if needed.

Allow freedom to make decisions when they can. Here are some examples:

When choosing a medic alert bracelet or EAI carrier/bag, let your child pick the style and color.
When going out with friends permit your child to decide to eat beforehand, take his/her food or find a safe restaurant.

Respect their decisions, as long as they are safe.

Lead by example
Don’t hide the extra work that goes into caring for your kid. Children need to be aware of this. Discuss with your child how you research food, train grandparents and babysitters and talk to friend's parents about what food they will serve at a party. Don't allow children to think that they magically live in an allergen-free bubble most of the day. When they discover this isn’t reality, it will be difficult for them to process and learn how to keep themselves safe.

Your child is always watching you and will learn how to manage food allergies by how you manage. Set an example that you would want your child to replicate. Be confident with your management techniques.

Stay positive
Keep in mind your tone and delivery when talking with your child about food allergies. Be positive. Don't nag or bark orders at your kid.

Ask open-ended questions that will lead to a discussion instead of lecturing.

Encourage children to take ownership of food allergy management. Empower them to make safe choices for themselves.

The ultimate goal is children that are confident and careful. We need to teach children successful and confident food allergy management that allows them to LIVE their lives.

Living with food allergies and understanding risks...

2/8/2016

by Amanda Painter, South Chapter Coordinator

Living with food allergies comes with risk. Those managing food allergies must work to reduce risk with the understanding that all risk cannot fully be removed, but it can be managed. While high risks need to be avoided, other risks can be minimalized and controlled. Reducing risk is key for successful food allergy management.

There is a fine line between appropriate precaution and being overly cautious. How do we strike a balance that leads to a well-adjusted life?

First, recognize that different factors and components contribute to risk. Some of these factors are associated with higher risk. Recognizing high risk situations is crucial to avoiding potential life-threatening reactions.

Individual
The age and diagnosis of the individual is the first factor that should be looked at in each situation.
For example, toddlers and teenagers have different risks associated with their age. Crumbs on the floor can be an immediate risk to a crawling toddler, but not necessarily for a teenager. It’s important to understand that risks change as a child grows. Address these changes and communicate with the child on how they can help recognize and manage the risks.

Teens and young adults are the age group at highest risk of anaphylaxis. Teens have less adult supervision and may take risks in an attempt to fit in and avoid social issues.

Those with asthma are at a higher risk of anaphylaxis due to reactive airways being prone to respond with narrowing.

Food Choices
Depending on what allergens need to be are avoided, different foods are of high risk. Familiarize yourself with the top type of foods to avoid. For example, desserts are high risk for those with peanut and tree nut allergies. Those managing a mustard allergy should be cautious of sauces, condiments and marinades.

Complex dishes with several ingredients and sauces are also high risk. Allergens are harder to be seen in this type of dish. Order simple dishes with few ingredients to reduce the potential for hidden allergens.

Choosing a restaurant where there is a language barrier adds additional risk. Be sure you are able to clearly and effectively communicate with those preparing your food.

Understand that alcohol can affect judgment and increase risk-taking behaviors.

Situations
Lack of adult supervision can increase risks depending on the age and self-management skill level of a child with food allergies. If a child is not capable of self-management be sure they are supervised by an adult that understands prevention steps and is trained to recognize and treat a reaction.

For teens and young adults capable of self-management, it is still important that they be surrounded by those that encourage them to make healthy choices.

Choices/behaviors
Managing food allergies and the associated risks confidently largely comes down to communicating with those around you about your allergies. Choosing to not communicate your needs regarding food allergies with others, especially those preparing food for you, is a risk that is not worth taking.

Ultimately, the most dangerous situation is choosing to not be prepared for a reaction. Not having epinephrine available is not a risk that should be taken.

Now that we’ve looked at the different factors that contribute to risk we can analyze and prepare for risk better.

Identify the risks
Sometimes this is easier than others; for example, a birthday party. It’s fairly easy to identify that the cake or other food to be served, and possibly messy hands from other kids, is the risk.
Other situations may create a long list of potential hazards. Summer camp for example. Who is providing the food? Will my child always be under the supervision of someone who is trained to recognize and treat a reaction? Is there a communication system in place to call 911? How far away is the nearest hospital? For more complex situations, make a list of concerns so nothing is over-looked.

Assess and evaluate to understand the level of risk
Prioritize what is high risk and urgent and address those concerns first. Educate yourself, your children and those who care for your children about high-risk factors and situations.

Acknowledge what should be avoided
Some situations are nonnegotiable. Removing yourself or your child from or avoiding a dangerous situation at times may be necessary.

Don’t avoid a situation simply because it CAN be avoided. Avoid if it SHOULD be avoided. It’s important to acknowledge if there is a true risk or if something is being avoided due to anxiety. Avoidant coping isn’t a healthy solution. If you are uncertain if a situation is safe or not, consult your allergist.

Implement strategies to control situations where you can minimize impact
Plan ahead and be in control. Make safe choices and be confident in your choices. Teach self-management skills to children at a young age and add to the responsibility as they mature.

If diagnosed with asthma, work to keep it under control and avoid your triggers.

Follow reaction prevention steps. Be vigilant about label reading and ensuring your food is safe from allergens. Never assume a food is allergen-free. Communicate with those preparing and cooking food for you.

Always be prepared for a reaction. Know that anaphylaxis is unpredictable. Previous reactions cannot predict how severe a reaction may be in the future. If you have been prescribed epinephrine, you are at risk of anaphylaxis. Always carry 2 auto-injectors with you at all times, and follow your emergency care plan on when to use it. Be confident on when and how to use an auto-injector.

Living a balanced life is possible while managing allergies. It does take effort though. Confident food allergy management happens through making smart choices every day to avoid or minimize risks. Keep a positive outlook that you are in control of what you eat and always prepared if a mistake does happen. Do not let your food allergies define who you are or restrict you from living the life you want.

***While talking about the risks that come with food allergies, I must mention that some individuals are more risk adverse than others. Accepting different levels of risk can be dependent on many factors including education level and doctor recommendation.
One way that many with food allergies take risks is by consuming foods with cautionary labeling, such as “May Contain…”. I urge everyone managing food allergies to educate yourself on this topic. Understand the limitations of food labels and what “may contain” truly means. Allergic Living covered this topic well in May Contain Confusion. Also, please read the story of how complacency and not taking cautionary statements seriously resulted in one young man’s death here.

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