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.

Rochester, Michigan mom fights for warnings on restaurant menus

Girl on floor playing with toysApproximately half of fatal food allergy reactions are triggered by food consumed outside the home. Read how one mother in Michigan is pushing for a state law that would require restaurants to list the eight most common allergens next to the items on their menus — peanuts, tree nuts, milk, eggs, wheat, soy, fish, and shellfish. Michigan already has laws in place to require restaurant management training and for schools to stock epi-pens for use on anyone in an emergency.

Rochester, Michigan mom fights for warnings on restaurant menus

 By Kristen Jordan Shamus

Elias Habib says he wants to be a doctor someday "to help people feel better."

The 6-year-old dimple-cheeked boy from Rochester knows what it is like to feel sick. He's allergic to peanuts and tree nuts. Eating even a trace amount can send his little body into a dangerous tailspin: He vomits and sneezes. He gets a rash. His eyes turn red and tear up. His nose starts to run; he coughs and has trouble breathing.

It's a reaction that terrifies his parents, Tim and Christine Habib. They know it could kill him. That's why Christine Habib is on a mission to make the world — or at least Michigan — a safer place for her son. She's pushing for a state law that would require restaurants to list the eight most common allergens next to the items on their menus — peanuts, tree nuts, milk, eggs, wheat, soy, fish, and shellfish.

"Food allergies are real," Christine Habib said as she played Legos on the floor with Elias and his younger brother, Joseph, on a snowy mid-February evening. "They are completely and 100% real. I understand that there are parents out there who can't grasp how serious a food allergy is. But, unfortunately, a seemingly harmless food like a peanut can kill my son."

And it almost did. In late October, the Habibs ordered takeout from a small Middle Eastern chain restaurant near their home. Christine Habib says she mentioned when she placed the order that her son has nut allergies and asked whether any nuts were in the sandwich she chose for him.

She was assured there were none. When she picked up the order, she says she again verified with the cook and the person at the cash register that the sandwich was free of nuts. But soon after Elias ate it, he got violently ill. It turns out, there were peanuts in the marinade used on the meat in the sandwich.

After vomiting, Elias' eyes turned red, he got a rash and began to cough and sneeze, and the Habibs knew they had only a few minutes to get him to the hospital.

"Honestly, I felt like it was really a wake-up call, what happened to us," Christine Habib said. "We're one of the fortunate ones because my son is still with us and still here."

Belinda Vaca wasn't so lucky. Her only child, Sergio Lopez, died in June after eating takeout from a Texas restaurant that also assured him there were no peanuts in the taco he ordered.

"I never thought my son would die of this," said Vaca, who noted that Sergio, who was 24 when he died, had several serious reactions before his last, fatal one. "I guess I just didn't want to accept it."

Vaca is trying to get a similar law passed in Texas, and says she'll come to Michigan to support Habib, who has written to state lawmakers, and is working now on a petition drive to rally support for such a law.

Their efforts come after Gov. Rick Snyder signed legislation in January that requires Michigan restaurants have a manager take a training course about food allergies, which affect 15 million Americans, and are a growing problem, according to the Food Allergy & Anaphylaxis Connection Team, or FAACT. As many as two children in every U.S. classroom now have food allergies.

And for the first time last year, Michigan schools also were required to stock epinephrine pens, which, if injected during an allergic reaction, can slow the response long enough to get a child to the hospital.

"We're definitely making progress," said Habib. "If they're willing to do that, maybe they'll do this, too. I know the restaurant industry is a huge industry to tackle. But I've said it before. I can't just do nothing. I've got to at least give it a try."

Vaca is still grieving for her only child.

"I believe he's with other family members in heaven, and someday I'll see him again," she said. "Even though I'm a believer, I don't want this to ever happen to anybody else again. So, I want to do my best to be in advocacy for people with peanut allergies and other allergies. And educate people, make people aware of this, so it won't ever happen again. That's my goal in life."

Karen Harris, who owns a Japanese sushi restaurant in Georgia and is vice president of restaurant and food industry Services for FAACT, says eating out is the most dangerous to allergic people.

"Studies report that approximately half of fatal food allergy reactions are triggered by food consumed outside the home," she said.

Harris said some well-known chain restaurants already have special menus for people with food allergies, lauding Red Robin, Olive Garden, and P.F. Chang's, among others. While that's a big deal for food allergy sufferers, it's still no guarantee that the food they're served will be safe.

"Even with new laws being adopted and policy being developed in many restaurant and food-service establishments, this is not a guarantee that the food-allergic individual will be provided a safe meal," she said. "Food-allergic individuals must always be prepared for an emergency."

That means always carrying an epinephrine pen and other emergency medications, by being certain the restaurant staff knows about the allergy, and repeatedly asking whether the food was properly prepared.

"Mistakes do occur in the industry, especially during peak hours — which often creates a high-paced and stressful environment for restaurant employees," Harris said. "I don't feel we can just create a law and then everyone who has a food allergy can say, 'Oh, this is going to make them safe for us.' There's a part everyone needs to play. Everyone needs to understand they have a responsibility.

"It's going to be a process, and it's going to take action from everyone involved — the restaurant associations, the food-allergy community and the advocacy organizations, to make sure we're creating resources to provide establishments with the tools they need."

Justin Winslow, vice president of government affairs for the Michigan Restaurant Association, said he hasn't seen Habib's proposal, but noted that 2014 was a huge year for Michigan in terms of food-allergy awareness and change.

"We had a pretty productive yearlong discussion on this issue, involving all of the stakeholders, including several parents of children with severe, life-threatening food allergies. We went through this process, and we passed a law that really makes Michigan on the cutting edge — we're one of only three states that require this education. We've gone through this exercise, and while I understand where she's coming from, I really think we need to give this law a chance."

Tim Habib said that while some people would say the solution is for people with food allergies to just stay home, and never eat out, that isn't realistic, and doesn't solve the problem.

"It's really impacted our lifestyle. ... We used to like dining out a lot, but now it's very much a scary proposition for us," he said. "It's just so hard to trust. There's so many marinades and sauces that a lot of people who work in restaurants don't know about, and there's also ingredients bought in from third-party vendors. Not everything is made from scratch.

"It's also affected the way we vacation, too. Mexico is not an option anymore because there's a language barrier, and every time we go out to eat, we won't be able to explain that our son has a peanut allergy. So, our hope is that we can affect some type of change where we'll feel safe some day."

Christine Habib said she isn't asking restaurants to change what they serve or divulge recipes. She'd just like some transparency for people who could die if they eat the wrong thing.

"Currently, there are no guidelines to ensure customer safety in regard to food allergies except a disclaimer at the bottom of a menu that usually states to tell your server if you have any food allergies," Christine Habib said. "I did that and it wasn't enough to avoid" Elias' serious reaction.

"As his mom, it's my responsibility to speak up for him. He can't speak for himself right now. If this means that it's a safer future for him and others living with life-threatening allergies, then I'm going to try my best to do that. I feel like I can't just do nothing and just wait for something to happen. I'm going to try to make it happen myself, even if it seems impossible."

Contact Kristen Jordan Shamus: 313-222-5997 or This email address is being protected from spambots. You need JavaScript enabled to view it..

Hundreds Saved By Stock Epinephrine in Schools Last Year

Ten percent of schools had 1-2 cases of anaphylaxis occur on school grounds last yearMylan Specialty sponsors an EpiPen4Schools program that provides free epi-pens for qualifying schools throughout the U.S. Their annual survey found 919 episodes of anaphylaxis in the 2013-2014 school year alone. Most significant, in 22% of cases anaphylaxis occurred in students or staff members with no known allergies, and they would not have had a prescribed epinephrine auto-injector on hand.

Hundreds Saved By Stock Epinephrine in Schools Last Year

Posted by FARE on March 4, 2015

A total of 919 anaphylactic episodes occurred in schools last year, according to a new survey of schools participating in the EpiPen4Schools program. This program, offered by Mylan Specialty, provides free epinephrine auto-injectors to qualifying schools in the U.S. Results of this survey were provided during a poster presentation at the recent meeting of the American Academy of Allergy, Asthma & Immunology.

Out of the 5,683 responding schools, 10 percent had 1 to 2 cases of anaphylaxis occur within the 2013-2014 school year, meaning more than 1 in 10 schools had to respond to a severe allergic reaction on school grounds.

Importantly, in 22 percent of cases, anaphylaxis occurred in students or staff members with no known allergies. These individuals had no reason to believe they would be susceptible to having an allergic reaction, and therefore would not have a prescribed epinephrine auto-injector on hand. These schools all had stock auto-injectors on hand, provided by the EpiPen4 Schools program, which were used to treat 310 cases of anaphylaxis in schools that year.

Ensuring that schools have access to epinephrine auto-injectors for emergency use has been a priority for FARE for several years. We have worked with advocates and legislators in many states. Our work in Illinois in 2011 was influential in the introduction of the federal School Access to Emergency Epinephrine Act by Senators Durbin and Kirk. Championed by many advocates including FARE, and signed by President Obama on Nov. 13, 2013, this bill provides financial incentives to states that require their schools to stock epinephrine auto-injectors. Eight states now require epinephrine while another 38 states have laws or guidelines allowing for epinephrine to be stocked in schools.

FARE is thrilled that this life-saving medication is now available to be used in schools across the country. While students and staff with known allergies should always have two prescribed auto-injectors on hand, it has been proven that undesignated auto-injectors play an important role in treating reactions for the previously undiagnosed or individuals with allergies who may not have immediate access to their medication.

One of the most compelling findings of the survey is that nearly 50 percent of students who experienced anaphylaxis were in high school. Research shows that teens are more likely to engage in risk-taking behaviors when it comes to their food allergies, and teens are at the highest risk for fatal reactions.

Additional findings of the survey include:

A second epinephrine injection was given in 9 percent of cases, emphasizing the need for individuals to carry two prescribed auto-injectors with them at all times, as well as the need to have extra auto-injectors on hand in case the need arises.

In 36 percent of schools, a limited number of adults (only the school nurse and select staff) were trained on how to recognize the signs and symptoms of anaphylaxis and administer epinephrine.

Epinephrine is the first-line treatment for anaphylaxis; however, 157 anaphylactic episodes were reportedly treated with antihistamines only instead of epinephrine.

Symptoms may return after the initial treatment of anaphylaxis, so it is imperative to transport the person to the hospital for observation. This survey showed that 20 percent of patients were not taken to the hospital, suggesting that further education is needed on this treatment step. FARE has recently launched an initiative to help educate emergency medical professionals about how to enhance the treatment of anaphylaxis.

The results of this survey are encouraging in that they show that stock epinephrine saves lives – making the additional time and effort it takes to maintain a supply of the devices well worth it. They also underscore the need for more training and education about the identification and proper treatment of anaphylaxis. To learn more about the EpiPen4Schools program, go to www.epipen4schools.com.

Disclosure: Mylan Specialty is one of FARE’s corporate partners. This post is not sponsored and contains no affiliate links. Please note that FARE does not review, test, sponsor, endorse or recommend any products or services that may appear on our website or blog. 

New Peanut Allergy Study Does NOT Blame Parents!

A pile of peanutsBefore we uncork the champagne bottles, here is important information regarding the recent study where infants were fed small amounts of peanut allergen to try to prevent future life-threatening allergies. This is just one study that must be repeated before any conclusions can be drawn. Parents should certainly not start feeding high risk infants peanuts at home.  Read all the details:

New Peanut Allergy Study Does NOT Blame Parents!

Posted by Kids With Food Allergies
on February 27, 2015

Why It’s Important to Read Past the Headlines — Doctors Explain New Peanut Allergy Study

Editor's note:  The KFA/AAFA leadership recognize that interpreting the findings of the Learning Early About Peanut (LEAP) study is difficult, with so many people offering so many opinions.  We have asked two of our medical experts—Drs. David Stukus and Matthew Greenhawt — to help you all “read past the headlines.” 

The food allergy community, including allergists, parents, and anyone living with peanut allergy, has been abuzz since the unveiling of the results from the landmark study Learning Early About Peanut Allergy (LEAP). The increased chatter has unfortunately included many different interpretations of the data, many by unqualified people (including some physicians!) Research studies can be difficult to interpret. There are often very situational-specific issues regarding the methods used to conduct the study, select participants, and how applicable the results may be. In an effort to gain extra clicks or more readers, headlines often defer to eye catching and misleading statements - or do a better/worse job at explaining those aforementioned issues. That’s why it’s so important to read past the headlines when forming opinions about medical research findings.

The details of the LEAP study were dissected and explained in an earlier Kids With Food Allergies release, and we encourage anyone with questions to read that article in conjunction with this post. In reading the response on the KFA Facebook and Twitter pages, there is a range of opinion from disbelief, to anger, to even guilt. While it is great that a food allergy study is achieving such a high level of awareness, we want to make sure that its message is handled appropriately. 

What we’d like to focus on is some of the fallout that has come to our attention. At AAFA and KFA, we strive to be a source of evidence based, reliable information for the food allergy community. The following points may not be all inclusive, but hopefully will provide some clarification.

For parents who currently have children with peanut allergy and withheld peanuts during infancy — this is the most important message: IT’S NOT YOUR FAULT! Development of peanut allergy is an extremely complicated mixture of genetics and environment that remains poorly understood. For years, the world’s experts recommended avoidance of peanut, and have now admittedly delivered confusing messages with conflicting recommendations.

It is very hard to make any conclusions about what is “right” or “wrong” to do based on one study. This study was very well done, but its results must be repeated.

The LEAP study had absolutely NOTHING to do with treatment of peanut allergy. It was a study designed to assess a possible prevention strategy, only in very young infants before they were exposed to peanut.

The findings of the LEAP study do not apply in ANY WAY to anyone currently living with peanut allergy. Again, it only deals with small babies who do not have peanut allergy.

This does not change food allergy management or all of the sudden make it safe for people at risk of reactions to peanut to start eating peanut.

This study should not change anyone’s current food allergy avoidance strategies, including that at home, school, work, or during travel. 

Parents should NOT start feeding high risk infants peanut at home. Every single participant in the LEAP study had a thorough evaluation with both skin prick test and oral food challenge to peanut before being enrolled in the study. Roughly 10% were deemed too risky to proceed.

The LEAP study looked at a very specific set of children, which included those living in the United Kingdom with severe eczema and/or egg allergy. These results may not apply to other groups, such as babies in the US or other countries, or those with other “high-risk” conditions for food allergy such as other food allergies or history of wheezing.

The LEAP study was not 100% successful. It tried to show if a smaller percentage of children would develop peanut allergy with early introduction of a fixed amount, compared to avoiding peanut.  Peanut allergy developed in both groups. Amazingly, allergy occurred significantly less in the early avoidance group, but again, it did occur in BOTH groups. 

There were some interesting points learned about how peanut allergy evolves.  About 2% of children with negative skin tests and 10% of infants with mildly positive skin prick tests still developed peanut allergy even with keeping it in their diet until 5 years of age.

Lastly, there has never been sufficient evidence to demonstrate that infants at low risk of developing allergy (no parents with allergy, no history of eczema or other food allergy) need to avoid peanut or any foods until later in childhood. The LEAP study has no bearing on these prior recommendations.

Medicine is an imperfect science, and even highly trained individuals do not always have the answers. We try to do the best we can with the information and experience we have at the time. Updates to recommendations are not unique to food allergy. In fact, there have been similar recent seismic shifts with regards to diabetes, cholesterol, hormone replacement therapy, and breast cancer screening.

We want to reiterate a key point. It is important to the KFA staff and medical advisory board that no one place blame or feel guilt/shame because you somehow “gave” peanut allergy to your child. This couldn’t be any further from the truth. We sense that there may be many parents out there right now harboring such thoughts. Go hug your food allergic child, tell them you love them, and praise them for living as good a life as they can with food allergy.  Do the same to yourself, too. The jury is not yet out on if early peanut intervention works and should be followed. This is not the promise of a cure, but rather a potential means of reducing the risk of developing peanut allergy. Again, this is one study, which like all studies has its good points and its limitations, but for us, it is important to guide you to read past the headlines, and focus on the key points of any research study.  

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