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.
by Amanda Painter, South Chapter Coordinator
Back-to-school can be filled with dread and anxiety for a family managing food allergies. My advice is to prepare well for the situation in hopes of removing as much anxiety as possible.
As you prepare for another school year, communication is key. You must communicate well with the school. You must also communicate well with your child.
The first step is to notify the school, in writing, of your child’s diagnosis. In your letter or email to the school, I recommend that you share an Emergency Care Plan completed by your allergist, ask what documents and forms the school needs from you and your child’s medical care team, and request a meeting to discuss the information in person. This will help everyone move forward with creating an accommodation plan once eligibility has been approved. It is also helpful if your allergist is willing to write a letter regarding your child’s diagnosis and include what steps are necessary to keep your child safe at school (i.e. must have epinephrine accessible at all times, allergen free classroom, etc.).
Next, work with your child’s team at school to create an appropriate written plan for accommodations. I recommend a 504 plan since it is a legally binding document that protects your child’s rights at school. Here is a link to one of my favorite blogs about 504 plans. I also have additional links with 504 information at the end.
What accommodations are appropriate? I advise starting with the CDC’s Guidelines. You can access the full document here (it’s quite long). Here is a 2-page list of accommodations that FARE created of the CDC recommendations. I find this list to be particularly helpful since it breaks it down into different locations in the school setting – classroom, cafeteria, transportation, etc.
Ask your child’s teacher to walk you through the day at school. Where will your child encounter food? Who is in charge of medication? Other than the teacher, who is responsible for your child’s care throughout the school day? You should pay special attention to transition times between activities/classrooms and schedule changes.
Items to pay particular attention to:
Location of epinephrine- Keep epinephrine with your child. It needs to be accessible at all times. If it is in a box in an office, how accessible is it? Minutes make a difference when treating anaphylaxis. Also, with every accommodation made, you need to remember what you are teaching your child about self-management. If you allow your child’s epinephrine auto-injector to be stored in the school office, how is that teaching your child to know he or she must always have it on hand? When it comes time for them to self-carry, will they understand the importance of keeping it with him or her? We have to be sure we aren’t sending our kids mixed messages.
Staff training- Your child needs to always be in the care of someone that is trained and willing to treat him or her with epinephrine. (This also applies to transportation to and from school as well as transportation during field trips). Your child’s Emergency Care Plan needs to be shared with the school’s care team. The ECP will provide them with concrete instructions on when and how to treat. Reactions are not a time for school staff to be left making a judgment call. Providing these steps in the ECP will save important time during a reaction.
Who is providing food?
Just like every other child at school, your child can eat in the cafeteria. School lunches are overseen by the USDA, and therefore public schools must make dietary accommodations.
If you choose to send your child’s lunch, one recommendation I have is to use an easy open lunch box that your child won’t need much help with. The less hands helping with lunch, the less likely a helper could contaminate your child’s lunch. My daughter uses a PlanetBox and it works wonderfully.
When it comes to lunch seating it’s important to have good supervision and make sure that your child is not isolated. Strategies to reduce risk need to be addressed. This will very much depend on your child’s allergens. Read more about cafeteria seating here.
You need to decide if you will allow your child to eat snacks provided by others (with the teacher being responsible for reading labels and knowing what brands are safe) or if you will be the only person providing food for your child.
Personally, my consent is required on everything before it can be fed to my child. I feel that it’s important that teachers not be put in a position to make medical decisions. They need clear, specific instructions. For example, a teacher should not have to decide what is or isn’t considered baked egg or distinguish between different varieties of nuts.
Parties & Celebrations
You need to come up with a plan that keeps your child safe AND included. You can read my thoughts on food in the classroom here.
Classrooms are for learning. Cafeterias are for eating. Your child is not being given every opportunity for success if they have anxiety and stress about the food that is ground into the carpet under the desk in front of them. This is a distraction from their education. Advocate for your child to have a supportive learning environment and have an allergen free classroom. (This is also recommended by the CDC).
Other items to be sure you address:
Are all substitutes trained? How will they be notified of your child’s specific accommodations? Will a TA that is properly trained on your child’s Emergency Care Plan be present at all times?
If you can’t attend, your child needs to be with a staff member that is trained to care for them (not a chaperoning parent who isn’t properly trained). Also, request that all field trips are assessed for safety and inclusion beforehand, and adjustments made, if necessary.
Does your child’s school sell food for a fundraiser? Your child should be exempt from this. Let me be blunt - it’s incredibly inappropriate for the school (or sports team, church, etc.) to ask a child to sell something that could kill them. If your family does choose to participate in such a fundraiser, talk with the school administration to ensure that the prize incentives are appropriate for your child.
Hand sanitizer does NOT remove food protein. Hands need to be washed or wiped with a wet wipe. Ideally classmates will do this upon entering the classroom in the morning and after lunch.
Your child’s accommodation plan needs to carry over to any other school activity. Your child has equal right to also be included in these activities, just like in the classroom.
Water fountains can have lots of food residue from the many hands and mouths that come in contact with them everyday. I recommend that your child carry his or her own water bottle and not risk the possible contact from the water fountain.
What if your child had to stay at school due to an emergency? (Think unexpected ice storm). What if your child dropped their lunch box and all the contents spilled on the floor? Is there enough safe food to sustain your child for a day? I recommend keeping a box of shelf stable food in the nurse’s office or your child’s classroom for these emergencies.
Communicating with your child
A child managing food allergies needs “food rules” or “safety rules”. Here are some suggestions:
Children, especially young ones, put their hands and other objects in their mouths. This can create additional opportunity for accidental ingestion. Work with your child on why it’s important to keep hands out of mouths and the importance of hand washing. Also, ask your child about school - specifically lunch, snack or social times. This will give them the opportunity to talk about anything that may not be going well or is upsetting to them.
Include your child as an active part of his or her plan at school. Explain that your child’s decisions and behaviors are a part of the prevention plan, but that others are also working to protect him or her. Tell your child what accommodations are in place to promote a safe environment. Show your child that his or her teacher is prepared with epinephrine, if needed.
Remember, open communication is key for keeping your child safe and included at school. Do your best to create a relationship of mutual respect with your child’s team at school. Say thank you when things go well and when accommodations are made for your child. When problems arise, document the issues and take them to the appropriate person to ensure the issue is corrected. Don’t hesitate to ask questions or speak up if you aren’t comfortable with something.
Sending a child with food allergies to school is one of the hardest things we do as parents. I also feel that it is one of the best things we can do for them. We must teach our children self-management skills. We also must teach them that the world isn’t allergy free. One day, they will be adults navigating an allergen-filled world without us planning their every move (and meal). We need to begin building their confidence to manage the diagnosis by empowering them in age appropriate ways.
With proper prevention and preparedness, our children are free to learn, grow and experience everything that life (and school) has to offer.
Links to additional information:
FAACT's Civil Rights Advocacy Resource Center
Thriving with Food Allergies, How to Obtain a 504 Plan
Questions & Answers on the ADA Amendments Act of 2008 for Students with Disabilities
The Civil Rights of Students with Hidden Disabilities Under Section 504 of the Rehabilitation Act of 1973
Guidelines for Managing Life-Threatening Food Allergies in Tennessee Schools
by Amanda Painter, South Chapter Coordinator
While we hope that emergencies don’t happen, it’s always important to plan for them. Thinking about emergencies isn’t desirable and can cause anxiety. When that anxiety is put into something productive however it can actually help alleviate some of those emotions.
For those of you that are the primary caregiver for a child with food allergies, like me, we put an enormous amount of effort into preventing and preparing for emergencies with our child. We spend a lot of time examining the “what ifs.” It is important though that we also consider what would happen to our child if we were the ones that had an emergency. What if you couldn’t care for your child for a day, a week or for an indefinite amount of time? Who would care for your child while you can’t? Does this person have all the information and tools to provide the same level of care that you do?
In an effort to relieve some of my personal anxiety, I have developed a binder with all of the necessary information needed to help give my child the best care possible. This binder also doubles as a tool I use for babysitters, and they are instructed to take the binder with them if an ambulance must transport my child to the hospital. I recently shared this binder with my support group. Their response was great and many have now made their own binders. Here is the information for you too ...
Inside the binder:
Family that lives in town
Neighbors/friends that live nearby
Weight (as of what date)
List of allergies
List of medications
Any other medical conditions
I also include some articles and blogs that have been helpful for me or express my thoughts and emotions about raising a child with food allergies. If someone were stepping into my shoes and caring for my child, I would want them to know this perspective.
Depending on your family situation, you may want to include a list of people that may be contacted to offer advice on managing your child’s allergies. I am blessed to have multiple family members in town and all are knowledgeable and trained on how to care for my daughter. This may not be the case for everyone though. Is there a person outside of your family and closest friends that you turn to for food allergy advice? It could be an old friend that lives in another state, but has a child with the same allergies. Do you belong to a support group? Your facilitator would want to support your child’s new caregiver the same way they have supported you. Be sure to pass their information along.
What resources do you use that make managing food allergies easier? A book, a website, etc.? Include all of this information.
Think about anything else that could be useful to someone caring for your child both emotionally and physically.
I hope you will consider making an emergency binder for your child. It will help if you ever have an emergency. It will also help you to focus some of your “what if” anxiety into an incredibly useful tool.
What other information would you include in a binder for your child?
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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