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
Last month a study was published in Annals of Emergency Medicine identifying 25 cases of epinephrine auto-injector related injuries. The majority of these injuries were lacerations to the thigh. The media has picked up on this study, and in typical media-fashion, some of the headlines are a bit dramatic.
If reading this study or the media reports scares you, take a moment to examine why.
Are you afraid you may injure your child?
Are you concerned because you never knew you might need to restrain the child and immobilize his or her leg?
Don’t let fear be what you take away from this study. We should never fear life-saving medication or the device that delivers it. We must be confident on how to properly use it.
Let this study be your motivation to practice with your auto-injector trainers. Practice restraint techniques. Don’t keep this information to yourself. Share this information with those who care for your child or any child with food allergies.
If you have ever been present for a child receiving a shot in the doctor’s office, you know that the nurse will ask the parent or guardian to help restrain the child. Administering an epinephrine auto-injector isn’t different. If anything, it is likely to be more stressful for the child and parent. Anxiety will be running high and you may not have another adult to help you.
The more confident you are about how to use the device properly, the less anxious you will be. This will help the child be calmer too.
Also, we need to educate children with food allergies to not be afraid of their auto-injector. Don’t talk to them about big scary needles, whether it is their auto-injector or a shot at the doctor’s office. Be honest that it may hurt, just for a minute, but if they are still and cooperate it will be over quickly. The main focus needs to be on how this will help them feel better, very quickly. You cannot predict how a child will react emotionally during a reaction, but you can be prepared to handle the unexpected.
FACET’s Medical Advisor, Dr. Singer had this to say about the study.
"The injuries, although undoubtedly painful, will heal, maybe with a scar. But the scar from not using epinephrine when needed is much larger.
As always, discussing injector technique and device type with your physician is appropriate. Not giving epinephrine when needed is not."
You can read the rest of his thoughts on the study here.
In response to this study being released Dr. Julie Brown (lead doctor in the study) and some of her ED colleagues demonstrated some options for restraint of a resistant young child. They are pictured below. (Thank you Dr. Brown for the examples!)
I cannot stress enough the importance of being familiar with your auto-injector. Know how it works and how to properly care for it. Understand that you can never use the same device more than once. This and many other reasons are why you should always carry 2 (see image below for more information on Why 2). Read more here about being confident on how and when to use your auto-injector.
I urge you to use this study to create a positive. Don’t be fearful. Use this as an educational moment to make your emergency preparedness stronger.
Now is a good time to practice.
As always, consult a medical professional if you have questions about your medication.
Fellow food allergy advocate Gina Mennett Lee created a “Beyond Awareness Educational Campaign” for 2015. One part of this is the focus on Do You Know Your EPI? Gina with the help of other star food-allergy bloggers, Caroline Moassessi (Grateful Foodie) & Sharon Wong (Nut Free Wok), are asking for help from other bloggers to assist in spreading the word. Here is the FACET Advocate take on it:
Food allergy diagnosis – check
Allergen avoidance – check
Epinephrine auto-injector on hand at all times - check
You are prepared for an emergency.
But are you confident about how to use an epinephrine auto-injector?
A recent study from the University of Texas Medical Branch at Galveston (UTMB) shows the misuse of epinephrine auto-injectors. 102 patients with prescribed epinephrine participated in the study. Of these, 16% properly demonstrated how to use the epinephrine auto-injector. That means the remaining 84% did not know how to use the device correctly. 84%!!!
You cannot save your own life or the life of someone you care for during an anaphylactic reaction if you do not know how to properly use an epinephrine auto-injector. I cannot stress this point enough. An auto-injector is useless unless you know how to use it.
Most cases of anaphylaxis that result in death are due to delayed epinephrine administration or not using epinephrine at all.
An anaphylactic reaction is going to be terrifying and emotional.
Your hands may shake.
You may fumble while finding the auto-injector.
You may second-guess if you truly need to use it.
Your heart will be racing.
You may have to restrain the child before administering.
You may panic.
Despite all of this, you MUST be able to properly administer the epinephrine. A life will depend on it.
Practice. Practice. Practice.
It’s important to know that there are multiple brands of auto-injectors on the market. All manufacturers of epinephrine auto-injectors have videos on their website demonstrating how to use their product. Be sure you are familiar with the brand that you will need to use in case of anaphylaxis.
In addition to knowing how to use it, you have to know when to use it. When to use epinephrine should be specifically documented in an Emergency Care Plan by your allergist. In my opinion, an Emergency Care Plan is the single most important piece of paper a person with food allergies should have. If you do not have a care plan, work with your allergist to create one specific to your/your child’s unique diagnosis.
While we’re talking about auto-injectors, a few items to know:
Successful treatment of anaphylaxis depends on 3 things:
Are you confident? If not, now is the time to speak up.
by Amanda Painter, South Chapter Coordinator
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