Family Food Allergy Foundation Memorializes Elijah-Alavi

Elijah-Alavi

The parents of three-year-old Elijah-Alavi were devasted by the loss of their son. While at preschool, Elijah, who had food allergies including dairy, was mistakenly given a grilled cheese sandwich. He suffered a fatal attack of anaphylaxis. From that tragedy Elijah’s parents embarked on a path of advocacy and education, so that other parents wouldn’t have to experience the same heartbreak. They founded the Elijah-Alavi Foundation, which includes “Elijah's Echo,” an initiative raising awareness of food allergies and anaphylaxis.    Read the article here.

Help! My Child Is Bullied Because of Food Allergies

Several girls bullying another girl in school cafeteriaHelp! My Child Is Bullied Because of Food Allergies

Intro
Following the article in last month’s newsletter about kids with allergies being bullied, here are some very helpful tips from parents and other experts if your child is facing this situation.

Allergies can be life-threatening – and a target for bullying. What to do if your kid is a victim.

By Anna Medaris Miller
Jan. 12, 2015

As a first-grader, Jeremy Francoeur didn’t want to go to school, and his mom didn’t know why.

When she asked, he told her about a game his classmates made up called “allergen tag.” The premise?  Each kid pretended to be a food Jeremy is allergic to – an egg, a peanut or a shell fish, for example – and tried to tag him.

“If he touched them, they would cough and say, ‘OK, you’re dead, you’re out,’” says Jeremy's mom, Laurel Francoeur, an attorney in Woburn, Massachusetts, who focuses on food allergy advocacy. “He just felt very alienated from that.”

That wasn’t all. One classmate would sometimes lick Jeremy's sandwich. Another would throw it away. Both pranks left him hungry, since he couldn’t eat the school’s food. Even in middle school, a peer called Jeremy, now 14, a hypochondriac because he said he couldn’t eat the food at a school event. In reality, if he ate it, he could go into anaphylactic shock, a potentially-life threatening reaction usually involving swelling, hives and low blood pressure.

“When people hear ‘allergy,’ [they think] you’re just going to get a little rash,” Laurel Francoeur says. “They don’t understand that it’s life-threatening – that’s an issue that you always have to combat.”

One in every 13 children in the U.S. has a food allergy, according to the nonprofit Food Allergy Research & Education. That's about two students in every classroom, the organization points out. And that proportion is on the rise: Between 1997 and 2011, food allergies among children increased by about 50 percent, according to a 2013 Centers for Disease Control and Prevention study.

"Over the last five years, we've seen many infants and toddlers with food allergies, so over the next few years there will be many more children in middle school and grade school with food allergies," says Mark Holbreich​, an allergist in Indianapolis. "It's a problem that we need to be more aware of." 

Bullying, which is common among children with allergies, only compounds the issue. In a 2011 study in the journal Pediatrics, nearly half of the ​251 food allergic kids reported being bullied, and nearly one-third were bullied because of their allergies.

The rate​ of children and adolescents bullied ​for any reason is around 17 to 34 percent, but it’s hard to pin down since there’s no universal definition for bullying, says one of the study’s authors, Eyal Shemesh​, an associate professor of pediatrics and psychiatry at the Icahn School of Medicine at Mount Sinai.

“It’s a higher rate than the general population, but that’s not surprising because they have a vulnerability,” Shemesh says. “It’s the nature of the beast.”

A Range of Consequences

Bullying is linked to an increased risk of depression, anxiety disorders and other psychological consequences, says Susan Swearer​, an educational psychology professor and co-director of the Bullying Research Network at the University of Nebraska-Lincoln. Her research has shown that kids who both bully and who are bullied are at greatest risk of developing psychological problems. “It’s not just the kids who are bullied or the kids who bully…but the kids who do both,” she says.

But the ramifications may be more profound for children who are bullied about their food allergies than for those who are bullied for other reasons because the threats and bullying acts often involve the food the victim is allergic to. That means the bullying ​can actually be life-threatening, Shemesh says. “I think this is one thing that sets apart, to some extent, bullying of food-allergic people” from bullying of, say, overweight people, he says.

Kids who are bullied about their food allergies can also become especially anxious after an incident, in part because they may believe their lives are on the line.

For Samantha Goldfarb​, an 8-year-old in Brooklyn, New York, with a severe peanut allergy, that anxiety stems from a time in kindergarten when a classmate chewed a peanut butter cracker, spit it out and smeared it on her hair. “It just terrified my daughter,” says her mom, Jo Goldfarb​. “We’ve been dealing with it ever since.”

In the Pediatrics survey, Shemesh found that the more bullying a child experienced, the lower his or her quality of life.

That’s notable, he says, because improving quality of life – rather than, say, managing pain – ​is usually the goal for someone with a food allergy. “When you have a food allergy you don’t suffer most of the time … if you don’t eat the allergen,” Shemesh says. “As opposed to other illnesses, the morbidity involved in food allergy is really very much about quality of life and anxiety – it's not about the illness itself so much.”

What Can You Do?

On the up side, not all kids with allergies will suffer negative consequences from bullying. Some may hardly be affected, and others may actually grow from the experience.

In the latter case, “the child will learn to handle these things in a way that will be beneficial to him or her during their life as an adult,” says Shemesh, ​ who directs the EMPOWER (Enhancing, Managing, and Promoting Well-being and Resiliency) Program at Mount Sinai’s Jaffe Food Allergy Institute. The program helps children and their families cope with the emotional and behavioral side of allergies through consultations, referrals and group treatment.

Jeremy Francoeur, for one, has already gained some positive traits from his experiences with allergies. He’s more responsible and less impulsive than most other kids his age, his mom says. “He’s also very empathic,” she adds. “It’s given him a lot of empathy because he realizes what it’s like to be the odd man out.”

Here’s how you help your child with allergies thrive and fend off bullying:

  • Educate. After Laurel Francoeur learned about “allergen tag,” she talked to her son’s teacher, who played a video about allergies in class. Afterward, Jeremy talked to the class about what it feels like to have allergies and to be excluded because of them. Education goes a long way,” Laurel Francoeur says. ​“Don’t assume that [bullying] is necessarily coming from malice.”​ Food Allergy Research & Education, for example, has resources for parents, teachers, coaches and other leaders to teach kids how to support peers with food allergies.
  • Know Your Risks. When Holbreich learns his young clients are being bullied because of their peanut allergies, he asks them what they think would happen if somebody touched them with peanut butter on their hands. Some say nothing, some say they might die. Then, he shows them the answer by putting a little peanut butter on their arms. “It sort of empowers the children to realize that if someone does stick some food in their face or touch them with food, they’re not going to have a severe reaction,” Holbreich says. “You’d have to inject the food to really ever have a problem.” In some cases, a child who’s believed to have a food allergy may not, since blood tests​ won’t measure the risk for allergies as accurately as diagnostic evaluations, says James Sublett,​ president of the American College of Allergy, Asthma and Immunology. That’s why it’s important to get tested by an allergist. “We’ve had situations where children come in and have been told already that they have food allergy, and once we do the evaluation and the challenge, they can eat the food with no problem at all,” Sublett says.
  • Get Involved. In their research,​ Shemesh and his colleagues found that when parents know about their child’s bullying – something that was the case only half the time – the child had a better quality of life and less anxiety. In a follow-up study published last year, the team found that when parents did something about it, like talking to school personnel, the bullying lessened. The message for parents? Ask your kids if they’re getting bullied, and if so, get involved. “Don’t ever say, ‘Just ignore the bullying,’” Shemesh says. “If you ignore a behavior ... it escalates before it extinguishes. And in this particular case you can’t allow it to escalate – it’s not an option.”

Anna Medaris Miller is a Health + Wellness reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at This email address is being protected from spambots. You need JavaScript enabled to view it..

Opinion: Epinephrine in every NJ school will save children from severe allergic reactions

NJ state capitol domeOpinion: Epinephrine in every NJ school will save children from severe allergic reactions

Intro
New Jersey is the latest state to follow in the footsteps of New York to allow the stocking of epinephrine in schools. Laws such as these have shown to save lives in other states, particularly in situations where it was not previously known a child even had a life-threatening allergy.

Times of Trenton guest opinion column

By Wendy Antosiewicz
January 09, 2015

Having a child diagnosed with food allergies is life-changing for the entire family.

When Isabella was diagnosed with multiple food allergies, we had no idea what would lie ahead. We quickly learned the seriousness of her condition — Isabella has had more reactions than any of us can count. We’ve tried procedures to lessen her reactions, we have epinephrine on hand at all times, we watch what she eats, but even with all of the vigilance, her allergies sometimes take over. We know too well the critical nature of having her epinephrine readily available.

What we didn’t expect was to find ourselves testifying in front of New Jersey lawmakers to pass legislation to keep other children safe. Just last month, Isabella and I spoke at a hearing on S801, a bill that would require schools in New Jersey to have epinephrine on hand in case of an anaphylactic — or severe — allergic reaction.

The Assembly and Senate have passed this important piece of legislation overwhelmingly and it now awaits Gov. Chris Christie’s signature.

Epinephrine is the front-line medication that needs to be administered immediately when someone is having an allergic reaction. Seconds count, and there’s often not time to wait to call 911 or to get to the emergency room. Isabella bravely described to members of the legislative committee her symptoms and what it feels like to have a reaction: wheezing, sneezing, coughing and throwing up. Her face and body turn bright red and sometimes her eyes swell. Her heart beats very fast. If it’s a particularly bad reaction, her throat can start to close.

Despite both of us feeling apprehensive about speaking publicly, we both knew that doing so would help save lives.

Children like Isabella who have been diagnosed with food allergies are in some ways safer than children who don’t know they have food allergies. Isabella has epinephrine with her wherever she goes. Her teachers, nurses and school administrators know that if she starts to show symptoms, she needs to be injected with epinephrine immediately.

S801 will stock epinephrine for the child who is not yet diagnosed. We are supporting the bill for all children and parents who do not know yet what a necessity this would be for them if there were to be an emergency.

I know if any parent watched what Isabella has gone through and knew that it could happen to their child at any time, from a food allergy or a bee sting, they would also support the bill.

Isabella has two sisters who are 4 and 7. It is frightening to think about them off at school not knowing if they have an undiagnosed allergy. None of the girls have been stung by a bee yet. Something as simple as that could mean an anaphylactic reaction — for any child. Without this legislation, there would be no medicine for them at the ready.

Having epinephrine on hand for immediate use for every child is such an easy way to save so many children’s lives. Food allergies aren’t going away, so we are asking Gov. Christie to take action and sign S801 into law. Not just for our family, but for all.

Wendy Antosiewicz is a committee member for the Food Allergy Research and Education Long Branch food walk.

Is Better Treatment Possible for Children With Food Allergies?

Hugh Sampson, MDIs Better Treatment Possible for Children With Food Allergies?

Intro
At the Jaffe Food Allergy Institute at Mount Sinai hospital in New York, researchers are working on developing more accurate diagnostic methods and better treatments, as well as preventions for food allergies. These include everything from skin patches with small quantities of allergens to Chinese herbal therapy. We hope this will soon result in a safer future for all.

Hugh Sampson, M.D.
Director, Jaffe Food Allergy Institute
Icahn School of Medicine at Mount Sinai

Your child, who is allergic to peanuts and tree nuts, just received a coveted invitation to a big birthday bash. She is excited... but you're terrified. What foods will they serve at the party? Will they use the same ice cream scoop for the butter pecan as the vanilla? Will they offer candy containing a trace amount of peanuts?

More and more American parents today are living with the fear that their food-allergic child will accidentally ingest a problematic food and trigger a life-threatening allergic reaction called anaphylaxis. According to the Centers for Disease Control and Prevention, the prevalence of food allergies increased approximately 50 percent between 1997 and 2011 among U.S. children aged 17 and younger. Currently, there is no way to predict one's risk for severe allergic reactions, and the only approved treatment methods for food allergies are avoidance, and administration of the drug epinephrine to stop a reaction should one occur.

At the Jaffe Food Allergy Institute, we are working to change that through research focused on developing more accurate diagnostic methods and better treatments, as well as preventions for food allergies. It is an exciting and promising time for food allergy research. Below is a glimpse of just some of our research aimed at improving treatment strategies:

Baked Egg and Milk Studies

The standard practice for managing egg and milk allergies has been to pull all forms of these foods from a child's diet. Recent studies have shifted our thinking about this treatment approach. Our research on milk and egg allergies previously showed that the majority of children with these allergies could tolerate products containing baked eggs and milk, such as muffins and cookies, because of the way heat changes the allergenic proteins. We also found that including baked milk or eggs in the diet speeds up the development of tolerance to regular egg or milk, compared to strict avoidance. We are now further studying the mechanisms responsible for these results, with the hope that our answers could dramatically change children's diet restrictions, while shortening the duration of their allergies to regular milk and egg.

Oral Immunotherapy

Our own research has shown that the prevalence of peanut allergy alone tripled among children between 1997 and 2008, with more than 1 million kids now affected. While children often outgrow allergies to some foods, such as egg, milk, wheat, and soy, allergies to peanuts and tree nuts usually persist. We are currently studying whether providing young peanut-allergic children with an experimental treatment of oral immunotherapy (OIT) will eventually eliminate their peanut allergy.

In OIT, we give a tiny amount of peanut flour periodically and then slowly increase the amount to determine the maintenance dose needed to desensitize the child to peanuts. It's similar to what we do with allergy shots for pollen allergies, except this is a very small amount of the allergen given by mouth. OIT does seem to provide good protection for accidental ingestion of peanuts, but the downsides include a significant number of adverse reactions that occur before the maintenance dose is found, and the requirement for therapy to continue long-term to remain effective.

Sublingual Immunotherapy

We are also looking at sublingual immunotherapy (SLIT). This is where we give children a small amount of peanut extract to hold in their mouth. The cells of the mouth take up some of the peanut protein, causing some desensitization to occur. Our findings so far are consistent with what other researchers have seen, in that SLIT does afford some protection for food allergies, but not to the degree that we're seeing in OIT. The big benefit is a significantly lower amount of adverse reactions. We are currently focusing on how to make this therapy more effective at providing a higher level of protection on par with OIT.

Epicutaneous Therapy

Another method we're researching is epicutaneous therapy to see if an experimental skin patch reduces allergic reactions to peanuts in children. In this study, for which I am the primary investigator, the child wears a small skin patch, similar to a little circular Band-Aid, which has a small amount of peanut protein in the center. Older children wear the patch on the inside of their arm, while younger children wear it on their back, and the patch is changed daily.

A very small amount of the peanut protein permeates the outer layer of skin, where special immune cells ingest it and make their way to local lymph nodes. Here, they activate a type of regulatory immune cell, which dampens the immune system's response to the peanut protein. In our research, we have seen virtually no systemic reactions in the children participating in this clinical trial, and we hope this therapy will prove to be a more permanent way to turn off an allergic reaction.

Chinese Herbal Therapy

Finally, we are about to start a human clinical trial of an herbal product designed for use as an investigational drug for children with multiple food allergies, a condition that can be particularly challenging when it comes to dietary restrictions. In preclinical studies, this herbal formula, which is derived from ingredients used in traditional Chinese medicine, proved extremely effective in turning off the allergic response in a mouse model of peanut allergy.

Research conducted over the past few years, and now underway at our institution and others around the country, has generated promising developments in diagnosing and treating food allergies. I am optimistic that in a not-too-distant future, parents will be able to send their food-allergic child off to that party, with the confidence that he or she will return home safe and sound.

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