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.
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.
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.
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?
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).
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.
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:
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.
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.
by Amanda Painter, South Chapter Coordinator
For those of us who are parents, caregivers, friends, teachers, and coaches to children with food allergies, remember that they hear what you say. The words that you use have a direct impact. If a child consistently hears that he/she is suffering, then that child will likely begin to view the food allergy (or any other condition or disability) in a way that may negatively affect the child’s sense of well-being.
Please understand that I am in no way discounting the pain that comes with food allergies. As a mother of a child with food allergies, I have witnessed and experienced this pain through my child. It is real and it hurts deeply at times. There is physical pain with each allergic reaction (from mild to severe), with allergy testing, and with each related disorder that usually accompanies this diagnosis. There is also heavy emotional pain that comes along with each allergic reaction, test result, lifestyle adjustment, etc...
and it is especially hurtful when the child/individual is viewed as different and excluded, for whatever reason.
Instead of placing the idea of suffering into a child’s head, we must use our words to encourage children and individuals with food allergies. Positive, intentional speech is a wonderful way to encourage, uplift and empower children to learn coping skills that aid in effective self-management.
Here are a couple of different word options that I prefer to use...
Manage: to have control of something.
: to take care of and make decisions about something. 1
Live: to be alive.
: to continue to be alive.
: to have a life rich in experience. 1
“My child lives with a food allergy.”
“The kids who are managing food allergies.”
Changing this one word can make a difference in our attitude towards food allergies and diagnosis of a disability.
Language is an incredibly powerful tool. Please use it in a positive manner. Living with food allergies is challenging, but challenges can be managed. When we use positive language to communicate about food allergies we promote understanding instead of pity.
Children (and adults) with food allergies should be taught that they are always in control, and often this relates to how they allow the diagnosis of food allergy to emotionally affect their life. We need to show them how to manage their allergies, how to be confident with their differences, and to LIVE a full life despite food allergies. Teach them to focus on actions to take, instead of being passive and feeling as if he/she is a victim or led by fear. Managing food allergies is a life skill that is vital to physical health, as well as emotional health.
Suffering shouldn’t be part of the identity of you or your child. Food allergies are only one portion of life; a portion that we are managing daily while living a life rich in experience.
1 Merriam-Webster Online
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