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
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.
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.
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