by Amanda Painter, South Chapter Coordinator
The job of caring for a child with food allergies is stressful. Researching food, driving to 3 different grocery stores to find safe brands, extra meetings at school to ensure safe accommodations, phone calls about what snacks will be served after soccer practice…the list is endless.
Then add the anxiety. The what-ifs. The worry of what could happen if the wrong food is eaten. Will you be confident enough to treat when needed? What if a reaction occurs and you aren’t there to treat your child? Is your child being socially isolated, teased or bullied?
Managing food allergies is a heavy load.
As caregivers, we have to remember to stop and care for ourselves as well. This is incredibly difficult for some to do. You must protect your own health - mental, physical and emotional health.
You are important.
You must nourish yourself on a regular basis. Developing a self-care routine takes effort. I suggest you start by setting small goals. Just take a moment to relax and breathe. Find 5 minutes each day and a place of peace or stillness. Unplug from technology and social media. Too much time online (reading scary anaphylaxis stories, for example) can cause unnecessary anxiety. Let go of the thoughts of navigating birthday parties, the items you forgot to buy at the grocery store and all of the what-ifs that cross your mind. Yes, all of those thoughts are important, but so is your health.
Search for something that allows you to turn off the worries in your head. It could be going for a walk, enjoying a cup of coffee while reading a book, meet a friend for lunch. Once you have established something small, build on it. Schedule a monthly mom’s night out, join a gym or find a yoga class (and attend regularly), plant a garden, take painting classes. Find something that you enjoy and give yourself permission to enjoy it without feeling guilty.
Ensure that you get enough sleep and have a healthy diet. We often focus so much on what goes in (or doesn’t go in) our children’s bodies that we neglect our own intake.
Ask for help.
Trusting others is often a struggle for parents of kids with food allergies. I have heard many mothers state that they trust no one to watch their child. In some cases, that even includes her spouse and extended family. I highly encourage you to find a way to do it though. Who else is capable of caring for your child or preparing food for him or her? This trust isn’t something that should be given lightly, so start small. It could be watching your child for an hour, and then build on it.
Kids need to feel safe with more than one person. While we need to teach our children to not be too trusting, we also need to work to establish a circle of support around them (and us). This circle should include those that know how and when to administer their epinephrine, what brands of food are safe and how to prepare a safe meal. It can be detrimental to your child’s mental health to think that only one person is capable of caring for them properly. What if something happened to you tomorrow? Do you have a plan in place for your child's care? (Read more here about preparing for those "what if" moments).
You are setting an example.
When you practice self-care you are setting a healthy example for your child. You are showing him or her the importance of caring for him/herself and that good health is essential.
Parents of kids with food allergies often say that we do not want our child’s identity to be defined by food allergies. We also need to take this lesson for ourselves and not allow our identities to be defined by our child’s food allergies. We are moms and dads, but we also have needs and wants in our lives.
Yes, as a caregiver we often have to put the needs of others before our own. It’s important that we find a healthy balance with this. In order to be an excellent caregiver, you must also care for yourself.
I encourage you to look at your own state of self-care and see where you could improve the quality of your own life. Improvement in your wellness will be reflected in the care you are able to provide your child.
by Amanda Painter, South Chapter Coordinator
Should I allow my non-allergic child to eat the other child’s allergens?
How do I introduce allergens to younger siblings?
Many parents of kids with food allergies face these questions, myself included. Advice from both our allergist and pediatrician was that we introduce all foods (including my daughter’s allergens- milk, peanut, tree nut, sesame & mustard) to my son and keep them in his diet with some regularity.
Making the decision to introduce allergens is a situation that is very family specific, unique to the diagnosed allergies and should be discussed with an allergist. I often hear of families restricting allergens in the diets of the non-allergic child 100% of the time. Yet going to this extreme isn’t necessarily in the child’s best interest.
Introducing an allergen to a non-allergic younger sibling is challenging and worrisome. It becomes more complicated if you have a home that is free of allergens. Currently, allergens are not eaten in our home (with a few minor exceptions). Not all families choose to have allergen free homes. Much of it depends on the allergens; age of children, nutritional needs of others, and many other reasons (this is a blog topic for another day). But if you do have an allergen-free home and are faced with the challenge of introducing allergens to younger siblings and including them in your non-allergic child’s diet, here are some tips from how we managed this for our family.
When my son turned 1, it was time to introduce cow’s milk. Figuring out how to do this in our milk-free house was a bit unnerving. For this situation, we introduced my son to milk for the first time at home while my daughter was out for the day. I also did it right before my son was going to take a nap. I cleaned him up well afterwards, brushed his teeth and then he slept. While we know that all of those things won’t get rid of 100% of the milk proteins in his mouth, we hope that it lessens them. We also took this opportunity to really focus on teaching our daughter to not put things in her mouth; toys, crayons, etc. and why it was important, since sometimes her brother eats foods she’s allergic to when he’s not with her.
Then came the time we needed to introduce peanuts to him. Peanut butter is messy and something I really didn’t want in my home. So, I decided to do this outside of the house. This situation made me more nervous than the others. So as we left the house that morning, I also grabbed our backup set of epinephrine auto-injectors. I placed my son into the shopping cart’s seat and fed him peanut butter candy as we walked though a store. (It was hard candy. Not messy. I also wiped off the shopping cart well afterwards. My children will not be the reason another food-allergy mom panics over left-over crumbs or food residue!) My reasoning for the location was that at least we were in a public place and there would be people there to assist with calling 911 if necessary. Looking back, do I think I was a little over the top? Possibly. But it gave me peace of mind at the time and the confidence to actually go through with feeding him peanuts.
My son and I continued regular outings to restaurants, incorporating all of my daughter's allergens into his meals or snacks until he started preschool. At this point we started buying individually wrapped/boxed allergen food items and send those to school with him. We keep them on the top shelf of the pantry/refrigerator. Everyone in the family is aware (including babysitters that come into the house). Even my son at three years old understands he can’t have those items in the house. There has been the occasional treat or leftover snack that has come in my son’s school bag. These are usually finished in the driveway.
Eating allergens outside of the house meant that we needed to introduce rules and procedures to reduce food residue coming into the house (and to help my peace of mind).
Making the leap to introduce foods that you know could greatly harm one of your children to the other sibling is a tough situation that must be faced.
Are you unsure if you should introduce an allergen to a younger sibling?
A recent study shows that siblings of kids with food allergies aren’t necessarily also allergic. If you are restricting the diet of one of your children due to the concern that he/she may also be allergic, I recommend speaking with your allergist to decide if this is best for your child’s individual needs. You can read Dr. Singer's (our Medical Advisor) thoughts on this topic here.
If your allergist recommends that certain foods should be introduced to other family members, develop a plan. Include friends and family to help with this. The first introduction can be filled with anxiety. Having extra hands around to help (or watch the child diagnosed with allergies) can lesson your anxiety. Once you’re over the hurdle of the first introduction, a quick stop at a friend’s house could be the perfect opportunity to have a snack that is normally off limits at home.
A limited diet is necessary for those diagnosed with food allergies. However, diets should not be restricted for someone without food allergies. Proper nutritional balance and variety are important. Don’t allow fear override what is best for your child’s health.
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
When I decided to attend my first FARE Walk for Food Allergy, I didn’t know what to expect. We didn’t have a local walk and traveled to participate in this one. I was compelled to attend though, for the sake of my daughter, and maybe for the sake of my own sanity.
The funds raised at the walk were for FARE (Food Allergy Research & Education). This organization (and predecessors, FAAN & FAI) had been my go-to for information as I was in the beginning stages of this food allergy journey. I was happy to do a small part to support this organization.
During the ceremony, the speaker spoke of her child with food allergies, how important it was to educate those around the child, and the hope for a cure. I looked through the crowd and saw tears in the eyes of other mothers; the same tears that were in mine. The connection was immediately there. They too were working tirelessly to avoid another reaction in their child. They worry that they won’t respond fast enough. They fear losing their child to the wrong food. They hope for a cure.
When I left the event I knew there was a larger community standing behind me supporting my child, my family and me. I knew I wasn’t alone with all of the challenges we faced, and challenges yet to come. I was a part of a community that understood and worked to create change. I left that event making plans in my head of how I could contribute more to this community that means so much to us. Fast forward to today, and now I co-chair a local walk.
I walk for my daughter
I walk to show my daughter how much we support her. I want her to feel the support of this community and know that she is never alone with the challenges she faces. She has a team behind her. A support network that is much greater than just our family and friends there walking with her. There is a community that knows her struggles and celebrates her triumphs with us.
I walk to have a morning that is all about her. She is often restricted in one way or another at kid-friendly events. We spend carnivals, festivals and other events following behind her, reminding her to be aware and not step on the popcorn spilled on the ground. Asking her to not touch this or that. Stopping a well-meaning person handing out free samples. Avoiding the melted ice cream on a bench. Answering her questions of, “is this safe for me?” The answer is often no. But at our walk, the answer is always yes. Yes, go play, enjoy and be unrestricted for the morning.
I walk for a cure
I’m a firm believer in accepting the diagnosis of food allergy and not being focused on the “someday.” I’ve moved past the stage of thinking “surely she’ll outgrow these allergies soon.” We live in the present moment, and in this moment she has multiple life-threatening food allergies. Despite this diagnosis, she is thriving. We still hope for a cure. A cure would allow her (and millions of others) to not live in fear of a reaction.
I walk to raise awareness and share education
Until there is a cure, it is vital that those managing food allergies live a full and happy life. I want this for my daughter and for everyone managing food allergies. It takes an educated and caring community to support individuals with food allergies. I want my child to be safe and included. I want her to be surrounded by those who “get it” and encourage her to make healthy choices. I want everyone around her to know how to help in an emergency. I want to surround her with a community that is compassionate to her challenges and support her to manage her diagnosis confidently. Awareness and education are crucial for all of this to happen.
I walk for 15 million Americans, millions more around the world, and their families
I walk for the parents that struggle to afford allergy testing and life-saving medication.
I walk for the adults managing food allergies in the workplace.
I walk for the mom afraid she will pass her food allergies onto her unborn child.
I walk for the college student that is navigating living away from his/her parents for the first time.
I walk for the teen challenged to be independent and remember all the steps to stay safe.
I walk for the child wanting desperately to fit in and not be excluded by classroom treats.
I walk for the preschooler struggling to forget the terrifying ride in an ambulance to the hospital.
I walk for the toddler too young to understand the consequences of trying a friend’s snack.
I walk for the mom that thought it was just another morning, feeding her baby a food for the first time. Not knowing her life would be forever changed in that moment.
I walk for the family that grieves the loss of a loved one due to consuming the wrong food.
I walk to honor the memory of those who have passed - Natalie, BJ, Sabrina and too many others.
I walk in hope that we will not have to add more names to the list.
I believe that focusing on something productive allows less time to dwell in the negative. Participating in our walk allows me to do this. It allows me to be a part of the solution to the challenges my family, and many others, face every day. It allows me to teach my children to do the same so that they will strive to be healthy and productive individuals. We chose to be positive and work to make our community and world better.
by Amanda Painter, South Chapter Coordinator
Peanut-free table. Allergen-free table.
Are these the best solutions for cafeteria seating?
The motivation for these special tables is that if allergens aren’t allowed at the table, we remove the risk. Sounds great, right? This situation actually raises more questions for me.
The terms peanut-free or allergy-free can be vague.
What does peanut-free really mean? No peanut butter? What about granola bars? Does anyone know if that eggroll has peanut sauce in it? How about the chicken tenders that may have been fried in peanut oil? What about the muffin that doesn’t contain peanuts but has a chance of cross contact with peanuts? Can a table be declared “peanut free” if all of these possibilities (and more) aren’t taken into account?
The situation becomes even more complicated for an “allergy free” table. If students have different allergies, can an entire table of students really have lunches that are all “safe”? Think about this scenario as an example: 7 students in one lunch period have food allergies. Nathan, Isaac, and Rachel are allergic to peanuts. Suzy is allergic to milk and peanuts. Johnny is allergic egg. Tim can’t have peanut, tree nut and poppy seeds. Emily’s list is soy, fish and tree nuts. Can an “allergy-free” table truly claim to be free from all of these allergens? Not likely. It would be close to impossible for all of these students to have meals that are not only safe for themselves but for the other students as well.
When working on lunch accommodations, I think it’s best to have the goal of reducing risk. It is not possible to remove all risk. Risk is a part of life for those with food allergies. Reducing risk is an attainable and realistic goal.
Alternatives to the peanut-free table
The riskiest items are the messiest ones. Strategic seating is the best way to reduce the risk of sticky peanut butter coming in contact with the child with peanut allergies.
Consider these alternative solutions:
Alternatives to the allergy-free table
A child can be allergic to any food. We need to be sure that we don’t overlook any of the food allergies that can be just as life threatening as a peanut allergy.
One of the most difficult to manage in schools is a milk allergy. Milk is everywhere. It’s spillable out of a carton, spreadable from yogurt and ice cream … then there is the cheese dust that sticks to little fingers after eating so many popular foods for kids. Also, what about the child with multiple allergies? The more foods added to the allergen list reduce the chance of a peer also having a “safe” lunch.
Here are some suggestions to reduce the risk for these children:
Again, lunch accommodations need to be specific to the individual child’s needs and situation. One of these solutions may work, or a combination of them may need to be implemented. Whatever strategy is chosen, the important part is that all of these solutions fully integrate the child. While some students may not get to sit next to their best friend, everyone has the same opportunity to socialize at lunch. Inclusion is necessary for all children.
All of the above solutions are focused on the seating, but seating is only one part of cafeteria accommodations. There is also a great need for supervision from school staff, especially for younger children. Be sure your child’s accommodation plan specifically states what is necessary for proper supervision. Training that includes how to recognize and treat a reaction are essential. Immediate access to epinephrine is vital.
Please don’t overlook how the table is cleaned. It’s very important that a spilled allergen isn’t cleaned with a rag and then spread to all the other tables by cleaning with the same rag. A disposable placemat can also add another layer of protection.
Peer awareness also plays a significant role in regard to safety in the cafeteria. All students need to know how they can support their peers. Included in this should be no food sharing, keep your hands to yourself, and don’t touch other people’s food.
Lastly, and in my opinion most importantly, children with food allergies need to learn how to safely and comfortably sit near someone who is eating their allergens. This is difficult. Some parents may not like considering it. I am a huge advocate for teaching our children self-management skills starting at a young age. Children with food allergies always need to be aware of food around them. They should not let their guard down just because they are sitting at a certain table in the cafeteria. This false sense of security can have dangerous consequences. Work with your child to only eat food that you have approved and stay focused on the food in front of them. Empower them to use their voice by speaking up if someone isn’t keeping their hands to themselves and always questioning something if they are unsure about it. Build their confidence. Encourage this confidence to lead their actions, instead of fear.
Do you have other suggestions that work well for your child? What does your school do to provide a safe eating environment for students with food allergies?
For more advice on school accommodations read my Back to School Prep Blog.
by Amanda Painter, South Chapter Coordinator
In response to the LEAP (Learning Early About Peanut) study, the American Academy of Pediatrics and other medical professional organizations are endorsing the recommendation of early introduction of peanuts to infants considered “high-risk”. AAP News (High-risk infants were defined based on family history, egg allergy and eczema).
First, I want to most importantly note that it is recommended that infants at high-risk be evaluated and tested, by a medical professional, before introduction. There will be infants that test positive at a young age. Please also be aware that there were a number of children in the LEAP study that weren’t able to complete it because they had a confirmed peanut allergy. Confirmed through proper testing/challenge. Do not feed your at-risk infant peanuts without consulting your physician (preferably a board certified allergist).
You can read FACET’s Medical Advisor, Dr. Singer’s thoughts on the LEAP study here.
Now what? What do we do with this information? How do we respond?
To the parents of children with food allergies:
To those that don’t have child with a food allergies (or have a food allergies yourself):
In my personal story, my daughter’s significant eczema (later discovered to be her reaction to the foods I was eating that she was exposed to through nursing) started before she was 3 months old. I could not have introduced any foods to her before that point. She tested positive for milk, egg, peanut, and tree nut at 9 months (others were added later and some outgrown). Hindsight shows that she was clearly reacting at 3 months. Was she allergic to all of these allergens at that point? What if her allergies were only milk and egg at 3 months? If we had introduced peanut at 6 months would she not have that allergy at 9 months? We’ll never know. At this point I won’t waste my time wondering “what if”…. that’s not productive.
The AAP recommendation change does nothing for my daughter or for the many families that I work with. It may slow the growing number of children being diagnosed however. Fewer children diagnosed with a peanut allergy can lead to fewer children living with the heavy weight of self-management on their shoulders, fewer parents terrified that they may receive the dreaded phone call about a reaction while their child is at school (Kindergarten or college), and possibly fewer precious lives lost to anaphylaxis. Again, it’s not a cure, but it is progress. I’m all for progress.
by Amanda Painter, South Chapter Coordinator
Our world is often turned upside down after the diagnosis of a life-threatening allergy. Many hours are then spent on research, how to avoid the allergen, what could happen if there is accidental contact, and on and on.
While this research is crucial and a part of the food allergy journey, I think it is important to not let it consume you. Once you have a good handle on the diagnosis, know prevention steps and are confident in your emergency preparedness, I think it’s a good time to take a step back. Take a break from reading the scary stories and find something else to focus on. This could be a new hobby, learning a new skill, or a home project.
For me, this new focus was still concentrated on food allergies but the focus was outward. My goal is to support those managing food allergies and to educate those that aren’t. I’m able to do this in many ways through FACET. This allows me to focus on something I’m passionate about and put my energy and knowledge into something positive and productive, instead of allowing the anxiety and fear to consume me.
I would like take this opportunity to highlight two companies that were founded by individuals doing the same thing. They have used their expertise to make a difference for others.
The first company is LifeReach. Here is what the co-founders shared with me about their inspiration:
“As the mothers of children with life-threatening allergies, we were determined to keep our children safe, while allowing them to lead full lives. As our children became old enough to be with caretakers, we focused on creating the feeling of home in our children's schools and churches. So, we started LifeReach, LLC to prepare those communities with quick, easy access to life-saving medication and education on how to recognize and respond to anaphylaxis. We rejected the fear and hysteria surrounding anaphylaxis and dedicated our efforts to helping change the outcome of an individual experiencing anaphylaxis. LifeReach provides bright orange, durable, tamper-evident Anaphylaxis Emergency Kits (AEK) to store epinephrine auto-injectors (EpiPen or Auvi-Q) as well as education materials approved by a nationally recognized allergist. After 9 years of successfully implementing our system in schools, we have heard from numerous caregivers sharing with us they are more ready, willing and able to be first responders while waiting on emergency 9-1-1 personnel should the need arise. Now, LifeReach is growing beyond Tennessee and placing the LifeReach AEK (same concept as AED) and educational materials in any appropriate location (schools, airplanes, stadiums...) to provide easy access to the life-saving medication, the knowledge of when it's needed and the confidence to use that medication.
Visit our website, LifeReach.com or call 1-844-kit-4you so we can help you and those in your community be more prepared.”
- Carol Len Portis and Katie Lennon - Co-Founders of LifeReach, LLC
The second company is Kiss Freely. While the companies seem very different, their motivations are very similar. I personally have had an excellent experience with their products as I was searching for make-up for my daughter’s ballet recital. (Kiss Freely makeup is free of her allergens!) Jennifer Kurko is the Founder of Kiss Freely. Here is her response when I asked her about starting the company, their goals and how it has been beneficial to her personally:
“Our goals for the company is to provide a safe alternative for people with food allergies and their loved ones, and to increase awareness, safety and research for food allergies.
We decided to start the company after my oldest daughter, who was 6 at the time, suggested it! I had been making lip balm and body butter for her for a while when she said, ‘I can't be the only person who needs special lip balm. I think we should sell it!’ We decided as a family that if we were going to do this a portion of the profits would go to food allergy advocacy, awareness and research.
As you know, we make a lot of make up for recitals. I know that that mom is already worried about so many things on recital day (is there food back stage? Who will keep the epipen?). I am so grateful that I made that mom's day a little easier. And seeing these young girls getting to wear make up like their friends makes me tear up every time. I show the pictures to my daughters and they always feel connected to this other child who is just like them. In a way the business has helped them connect with so many other people who are similar. It has made them feel less different.
We have a motto in our house, ‘there is a solution to every problem.’ The first few months or even years it seemed as if we could not really find a solution to the food allergies. Our business had helped us as a family to keep trying. We made so many bad lip balms before we made the perfect one. Right now I am working on liquid eyeliner for a nut allergic teenager. I am on my 3rd try and as a family we talk about it, our girls make suggestions and keep trying until we find something that works.
For all of us the anxiety is always there. The business for me, allows me to reduce the anxiety in one small area. “
I know I speak for many others in the food allergy community when I say – Thank you and great job, ladies!
If you find yourself becoming consumed in a negative way by managing food allergies, if the fear and anxiety are overwhelming, I encourage you to find something constructive to do with your excess time. Let these stories inspire you to focus outward and make a positive impact.
There are countless other companies that were founded for the same reasons. What is your favorite company that was started by someone with a personal connection to food allergies, working to make a positive impact?
Disclaimer: FACET does not endorse or sponsor the products/companies above. Nor has FACET been paid to include these products.
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
Allergy testing is part of managing food allergies. Test results can help with diagnosis and also help monitor allergies over extended amounts of time for the possibility of outgrowing an allergy.
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?
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