Back-to-School Homework for Food Allergy Parents

busFor some parents, sending a child with life-threatening food allergies off to school can feel like an overwhelming task, especially if the child is entering a new school or attending for the first time. FARE has many resources on our website’s “Managing Food Allergies at School” section, but there are a few key tasks for food allergy parents to complete before the school year starts.

Assignment #1: Get your paperwork in order

FARE’s Food Allergy & Anaphylaxis Emergency Care Plan should be on file for every student with food allergies. It outlines treatment recommended treatment in case of an allergic reaction, includes emergency contact numbers and is signed by the student’s physician.

Students with food allergies should also have a written management plan, such as a 504 Plan, in place. A 504 Plan (named for Section 504 of the Rehabilitation Act of 1973) is a plan that outlines the accommodations, aids or services that a student with a disability needs in order to use, and fully participate in, a free and appropriate public education (FAPE).

Assignment #2: Make your shopping list

Along with new sneakers and a lunchbox, add medical identification jewelry to your Back-to-School shopping list. Wearing medical identification at all times can help give you peace of mind that you are prepared should a life-threatening reaction occur. We have partnered with the MedicAlert Foundation to launch the “MyVoice” program, designed to help protect individuals with food allergies with life-saving services. The MyVoice program provides a 10 percent discount on MedicAlert memberships as well as $10 off a medical identification bracelet for both adults and children. Learn more on the MedicAlert website.

You can also purchase Allergy Caution Labels from Name Bubbles to  label items that travel to and from your house with identification and emergency contact information. Through FARE’s partnership with the company, they will be donating 20% of all allergy product purchases to FARE, with a minimum donation of $10,000 for 2014. Create your personalized labels on the Name Bubbles website

Assignment #3: Talk to your team

Putting a written management plan in place requires communication and coordination with many school staff members, such as administrators, school nurses, food service staff, and your allergist or other doctor.

Teachers are key partners in keeping children with food allergies safe and included at school. Before the first day of school, meet with the teacher to discuss the child’s emergency care and management plans. You can also provide him/her with a copy of FARE’s Teacher’s Checklist, which has 10 basic tips for teachers who have students with food allergies, such as using non-food incentives and having rapid access to epinephrine auto-injectors.

Assignment #4: Send education and awareness posters to your school

Back to School season is a great opportunity to take action and work with your local schools to educate the school community about the serious nature of food allergies. This year, with your $25 donation to our poster drive, we will send three premium posters to the school or community building of your choice to help educate and raise awareness about food allergies. This is a simple way you can provide your school with resources and make a difference!

Assignment #5: Have a family meeting

Talking to your child and explaining or reinforcing some basic safety precautions can help them feel confident entering a new school year. While each child is different, you can focus on a few things they can do each day at school, such as:

  • Knowing where their epinephrine is stored or carrying it with them at all times.
  • Always wearing their medical identification bracelet.
  • Only eating the food you have packed or approved as safe for them.
  • Telling an adult immediately if they feel sick.

In addition to the information provided here, there is a wealth of information about how to successfully manage food allergies at school on FARE’s website, including national guidelines from the Centers for Disease Control & Prevention (CDC), a letter from FARE to school leaders, and information about school access to epinephrine.

Letter to the Community from FARE’s CEO, John Lehr

John-800Dear FARE Supporters,

Since April 2012, I have had the pleasure and privilege of serving as the Chief Executive Officer of Food Allergy Research & Education (FARE), and its legacy organizations, the Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI). Today, I am announcing that I will be stepping down as CEO of FARE on August 30 to pursue a new business opportunity. You can find the full announcement here. Before I go, I wanted to take a moment to celebrate with you the terrific work we have done together.

In the past two years, FARE – and the food allergy community – have experienced tremendous progress and growth. First, through the formation of one national organization with a common mission—to find a cure for food allergies and to keep individuals with food allergies safe and included. From the merger, we developed a new brand, launched a new website, built a national field operation with six offices across the country, expanded grassroots fundraising opportunities, and exceeded previous fundraising records for luncheons, the FARE Walk for Food Allergy program, and major gifts. In our first full year as a new organization, we raised more than $16.5 million to support important food allergy research, education, advocacy and awareness initiatives, which represents an increase of more than 25 percent over the combined total raised by FARE’s legacy organizations in 2012. This would not have been possible without your generosity and commitment to our cause.

With these funds, we have made important progress in every area of our mission:

  • We established a new proactive research program based on the input of the leading scientists in the field and increased our investment in innovative treatments.
  • To further our education mission, we launched a national program to enhance restaurant safety for diners with food allergies, developed a program to help students with food allergies transition to college, held our first FARE National Food Allergy Conference, and introduced our free monthly webinar series to provide food allergy education to anyone with an internet connection.
  • In November 2013, President Obama signed into law the School Access to Emergency Epinephrine Act, a FARE-directed effort to incentivize states to stock epinephrine in schools. We have also been proud to support many successful state stock epinephrine initiatives led by dedicated local advocates.
  • We dramatically increased awareness of food allergy as a serious public health issue through our new award-winning website, media outreach, our social media outlets, and the nationally televised documentary, “An Emerging Epidemic – Food Allergies in America,” narrated by Steve Carell.

These are just a few highlights, and all of this success was made possible because of the dedicated staff, volunteers, donors, supporters and Board members who gave their time and resources, and worked long hours to make the world better for people with food allergies.

Thank you for everything you have done to help advance the cause.

The transformation of FARE and the food allergy community over two years has truly been remarkable. I am so proud to have been a part of that, and I will keep the individuals and families I have met and worked with at FARE forever in my heart.

I see a bright future ahead for FARE and the food allergy community, and know that a time will come when the hard work will have paid off, and we will have safe and effective treatments for all individuals with food allergies.  Thank you for the opportunity to serve, it has been an honor and a privilege.

 

Sincerely,

John L. Lehr

Winter Birth Increases Food Allergy Risk in Inner-city Asthmatic Children

Inner-city asthmatic children who were born in the winter (December, January and February) are more likely to be sensitized to egg, peanut or soy allergens than their counterparts who are born in other seasons, according to a recently published study in the Journal of Allergy and Clinical Immunology.

A multi-center research team, led by J. Andrew Bird, MD (University of Texas Southwestern Medical Center, Dallas) analyzed serum and historical information for 427 inner-city children with asthma. Eighty-two percent of the children were African American. Sixty-four percent were males, ranging in age from five to eight, and most lived in the northern U.S. (predominantly in Boston, Chicago or the Bronx). The researchers looked for a relationship between the children’s season of birth and the likelihood that they were sensitized to milk, egg, peanut, tree nuts, soy, codfish, shrimp or various indoor allergens (cockroach, mold, dust mites). They also analyzed the data to see if there was a relationship between allergen sensitization and the children’s vitamin D status, but did not find one. In addition, the study found no relationship between winter birth and sensitization to indoor allergens.

Previous studies have found an association between food allergies and season of birth, but they have focused primarily on Caucasian children. This is the first study to establish a connection between winter birth and sensitization to egg, peanut and soy in a predominantly black, inner-city population. The authors suggest more research be done to determine whether other factors, including winter viruses, geographic location and indoor allergen exposure, may affect food allergen sensitization during the winter.

A School Nurse’s Perspective on How to Keep your Child With Food Allergy Safe at School

cathyowensby Cathy Owens, RN, M.Ed, NCSN, ERSN

All schools have a duty to provide a safe environment for children and to act appropriately in an emergency.  We know that nearly six million children have a food allergy-which equates to approximately two per classroom! Additionally, according to the CDC, food allergies have dramatically increased since 1997 and many individuals do not have their epinephrine with them at all times.  So, schools need to be prepared to handle allergic reactions-not only in the child with a known allergy, but with those who have not yet been diagnosed.

My passion and advocacy for protecting students with food allergies in school came about because I had to make a decision to give a student another student’s epinephrine auto-injector when the student was suffering from severe anaphylaxis and paramedics had not yet arrived and unfortunately, he had no previous history of anaphylaxis so had no medication at school. Because of my actions, he was able to be safely transported to the hospital and recovered but it did shed light on the fact that without epinephrine available to any student suffering from anaphylaxis, the outcome could be much different.

As a result, California passed a law allowing schools to stock epinephrine for undiagnosed cases of anaphylaxis, but that is not enough because it doesn’t protect all the children, since schools have a choice.  A law, Senate Bill 1266, is now pending that will require epinephrine to be stocked in all schools. But it is important for parents and schools to partner together to reduce the risk of exposure and to ensure quick access to epinephrine.

Parents should work collaboratively with their school nurse, the cafeteria staff, administration and teaching staff with regards to classroom activities involving food (e.g. no peanut products should ever be used for classroom projects or snacks) as well as developing a plan for the cafeteria. Having an identified table for students to be able to sit at is an option or using paper placemats as a means to protect the child’s food from surface contamination and to identify it as a ‘safe zone’ for their food is another option.

Storage and access to the epinephrine should also be discussed. It should be easily accessible (if in a locked cabinet, all staff needs to have a key to the cabinet so critical seconds are not lost waiting for someone to unlock the cabinet. If the student carries their epinephrine, a plan needs to be in place as to who knows where it is and is the backpack with the student at all times. Additionally, field trips and other activities away from the classroom/health office (where the epinephrine is stored) need to be discussed and a plan needs to be developed.

Besides ensuring a safe classroom/cafeteria and storage issues, training of staff is a critical piece of the plan. Staff should be trained on the use of the epinephrine as well as signs and symptoms of anaphylaxis.  An individualized plan such as a 504 plan should be in place for all students with a known food allergy.

In conclusion, parents should work together with their schools and school nurse to develop a plan for a safe environment and also advocate for standing orders for epinephrine! It is important to remember that there is no absolute contraindication for giving epinephrine when someone is having breathing difficulties and most importantly, a child’s life may be saved!

Photo credit: Allergic Living

Discover the Positive Effects of Yoga

At this year’s FARE National Food Allergy Conference, teens with food allergies participated in a 90 minute yoga workshop learning how to enhance their quality of life and experience the mind-body connection. The workshop was led by Kristen Kauke, a licensed clinical social worker and 200-hour registered yoga teacher who teaches yoga weekly. Kristen’s two sons have food allergies, and Kristen also lives with food allergies herself, so she has a wealth of experience in coping with anxiety and living well with food allergies.

We asked Kristen to give us a recap of the mental and physical exercises that she led the group through during her workshop, as well as provide us with information on the positive effects of yoga.

kaukeyoga

By Kristen Kauke

Drawing on my knowledge of psychosocial principles, empirically based treatment modalities, group processes, yoga, and overall wellness, during this workshop I helped teens to quiet their minds, gain awareness of their body, and learn tools for coping with stress and regulating emotions. Research shows that stressors associated with managing life-threatening food allergies can have a negative impact on quality of life. Research also demonstrates that yoga is associated with a decrease in symptoms of anxiety and depression, and an increase in self-compassion. As the body and mind relax and release through breath and vinyasa (flow of postures), so do pent-up emotions and traumatic memories. This workshop allowed teens to experience such positive outcomes of yoga.

During this transformational workshop, I introduced teens to the connection between thoughts, actions and feelings. I call the negative cycle “the Bermuda Triangle” where catastrophic thoughts exacerbate anxious feelings and reinforce protective actions. In exploring the “Bermuda Triangle,” teens shared common anxious thoughts about living with food allergies such as “I’m not in control,” or “Sometimes I’m afraid I might die.” Teens noted correlating feelings such as anxiety, sadness, annoyance, or flabbergasted. And they identified typical protective actions such as isolating or being shaky. I challenged the teens to consider more ideal patterns of thoughts, feelings and actions in living with food allergies. These included more optimistic thoughts, feelings of safety and calm, and actions such as connection with others. I emphasized how changing thoughts changes feelings.

Then I led teens through the action of a gentle yoga flow. In this manner, teens experienced relaxation of the body, and consequently, a shift in baseline feeling. I highlighted how in using an action such as yoga, they could tolerate and even soften feelings.

Finally, through an experiential activity called “Being Willingly Out of Breath,” teens learned about parts of their Self, as well as applied tools to observe thoughts, tolerate emotions in times of stress, and listen to their inner wisdom.

Teens shared freely, laughed, and gained insight. They moved and stretched themselves both physically and emotionally. In the end, they learned that they DO have control over their wellbeing and can utilize tools to achieve calm despite living with food allergies.

Another important takeaway is that any BODY can do yoga! Yoga is for athletes and those who only run when being chased, super bendy people and those who can’t touch their toes, teenagers and silver-haired folk, women and men! Yoga offers something for everyone! If you’ve never practiced before, it’s best to take a class with a qualified teacher or follow a video. There are many different styles of yoga from restorative to powerful. However, the following are some simple and relaxing poses you might enjoy at home:

3 Part/Elevator breath – why and how

Beginning any yoga practice with a centering breath is of utmost of importance. When the breath slows, the thoughts follow. Diaphragmatic breathing signals the relaxation response in the central nervous system. One of my favorite breath exercises is the “elevator” or “3 part breath.”

To begin, exhale!

Then begin to inhale from the low belly and stop at “floor 1.” Pause. Inhale more to mid-belly or “floor 2.” Pause. Inhale to upper chest or “floor 3.” Pause. Then exhale slowly, contracting belly towards spine, tucking pelvis and lengthening spine until empty, or back to “floor 1.”

Begin again and repeat the cycle two more times.

Neck – why and how

We hold a ton of stress and tension in our necks! When our neck and jaw remain tense, it sends a signal to the central nervous system that we are in danger. This signal activates and maintains the stress response. To achieve consistent peace, we are wise to mind our necks!

Sit in a comfortable cross-legged position. Being by inhaling and simultaneously raising the right hand.  As you exhale, bend the right hand over the top of your head and pull down on your ear, moving ear towards right shoulder. Continue to inhale and exhale for three cycles. Then scooch your right hand to the base of your neck. Gently pull down on the base of your neck so your chin eases down and angles towards your right knee. Inhale and exhale for three cycles.

Release your right hand and allow your right palm to press into your forehead, easing your head back to center.

Repeat this process with your left hand over your right ear. First, left ear to shoulder. Then base of neck towards left knee.

Legs up the wall – why and how

If you’re only going to do one yoga pose, this is it!  This pose is like getting an oil change for all your internal systems. Besides increasing strength and flexibility, you reap cardiovascular benefits; you reverse the effects of gravity. This pose balances hormones, increases immunity, soothes the nervous system, and aids digestion and restful sleep.

To begin, scooch your right thigh and glut against the wall. Then shift your legs up, back down. Center your legs against the wall and align hips square.  Allow spine and neck to lengthen and rest on the floor.  Breathe your 3 part breath, allowing spine to sink to the floor, heart to lift with inhalation.  Hold legs up the wall for 3-10 minutes, with increasing amounts each trial.

Thank you to Kristen for providing this summary! We hope those of you reading at home will try some of her sample yoga exercises. For more content from Kristen, you can view a webinar she presented on the topic of “Dating and Intimacy Challenges Associated with Having Severe Food Allergies” on FARE’s website

FARE Membership: Join Us

Stand with us to make the world safer and more inclusive for individuals with food allergies! Being a member of FARE entitles you to some great member benefits, such as registration discounts to Teen Summit and our National Food Allergy Conference, a fantastic discount on a subscription to Allergic Living magazine, and advanced registration for our monthly educational webinars. But membership is about so much more than benefits.

Debbie Jacobs, of Potomac, Md., expressed this sentiment perfectly:

“Since she was a baby and my husband first found FAAN online and called to double-check what turned out to be erroneous advice from our pediatrician, FAAN and now FARE, has been there for our family. I can’t think of a single organization (or company) that has had such a direct and positive impact on our family than FAAN/FARE.  We have been members for 16 years and even if my daughter outgrew all of her allergies, we would continue as members just to show our support for an organization that has done so much for families with food allergies. The advocacy on food labeling laws alone would justify all of our annual dues! Now, that my daughter will be going away to college, it is great to see that FARE has taken such an active role in making colleges safe for students with food allergies. It seems that FARE is growing right along with our daughter, and it is my hope that as an adult she will continue to look to FARE for advice and support.”

Visit www.foodallergy.org/membership and join FARE today!

Researchers Discover Cause of Eosinophilic Esophagitis

Researchers report that they have discovered the cause of eosinophilic eophagitis (EoE), a hard-to-treat food allergy. In EoE, large numbers of white blood cells, known as eosinophils, accumulate in the lining of the esophagus (the tube that connects the mouth to the stomach), causing chronic inflammation. Led by a team at Cincinnati Children’s Hospital, investigators have found a new genetic and molecular pathway in the esophagus. This discovery, reported online today in Nature Genetics, opens the door to new therapies for EoE, which has been diagnosed in a growing number of children and adults over the past decade.

The study found that EoE is triggered by the interplay between epithelial cells, which help form the lining of the esophagus, and a gene called CAPN14. When the epithelial cells are exposed to an immune hormone called interleukin 13 (IL-13), which is known to play a role in EoE, they cause a dramatic increase in CAPN14. CAPN14 encodes an enzyme called calpain14, which is also part of the disease process. Because drugs can target calpain 14 and modify its activity, the study opens up new therapeutic strategies for researchers to explore.

drmarkrothenberg125x156“In a nutshell, we have used cutting-edge genomic analysis of patient DNA, as well as gene and protein analysis, to explain why people develop EoE,” says Marc E. Rothenberg, MD, senior investigator on the study. “This is a major breakthrough for this condition … Our results are immediately applicable to EoE and have broad implications for understanding eosinophilic disorders as well as allergies in general.” The study was funded, in part, by the National Institutes of Health (NIH), with additional support from other organizations, including FARE.