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.

NYS Assemblyman Tom Abinanti Supports Improved Access to Epinephrine Auto-Injectors in Schools (2)

By Kristen Stewart

NYS Assembluyman Tom AbinantiTom Abinanti, a Democratic Assemblyman representing New York’s District 92, knows firsthand the importance of having an Epi-Pen® at the ready during an emergency anaphylactic reaction.

“I have a 14-year-old son with autism and it turns out he has severe food allergies,” says Abinanti.  He and his wife learned this when the boy ingested almonds as a young child.  Fortunately it was not a severe reaction and they had an Epi-Pen® handy because their pediatrician had detected what he thought was an allergy to peanuts.  (It turns out he is actually allergic to all tree nuts.)

Years later after reading an article in the New York Times about school children with undiagnosed allergies, he put two and two together.  A child could be denied access to an epinephrine auto-injector (EAI) during an attack of anaphylaxis even when one was on hand, simply because of restrictions and the EAI’s expected use.

“Given my personal story with my son I immediately realized we should have Epi-PensTM available for as many kids as possible in schools,” he says.

What followed was research, drafting, discussion and revising a bill (NYS A07791) that authorizes NYS schools to be able to stock epinephrine auto-injectors and allow the school nurse and/or other trained personnel to administer them in the event of an emergency, whether or not the individual has his or her own epinephrine prescription.

According to the nonprofit advocacy group Food Allergy Research & Education (FARE), one in 13 children under age 18 have food allergies, with an 18 percent increase having occurred between 1997 and 2007.  A07791 is particularly important as food allergies occur in approximately 8 percent of children, and 25 to 30 percent of anaphylactic reactions happen at school to students who have never had a prior attack and are not aware of their allergies.

Abinanti and his staff have encountered some concerns about the bill.  One is making sure people know the signs of an anaphylactic reaction so that a misdiagnosis doesn’t occur such as administering the EpiPen when really the child is choking.  Ensuring proper training can help ease this worry.

Another issue is funding.  “School districts are overwhelmed right now with all kinds of mandated costs,” he says.  “Even if it’s for a good purpose, what happens is you don’t get a rational discussion, you get people reacting you’re taking more money away from the teaching function of schools and putting it somewhere else.”

To address this, his bill has been written to authorize schools to stock EAIs rather than requiring them to do so.  Abinanti believes the enactment of the federal School Access to Emergency Epinephrine Act late last year will also help this bill by sending the message that the federal government has looked at the issues and is satisfied that they can be overcome.   He is also hopeful that if the bill passes and enough schools do it voluntarily, the state might be able to work out bulk contracts with EAI manufacturers to help keep costs reasonable.

While Assemblyman Abinanti is working hard on his end to get this legislation passed, he encourages concerned citizens to do their part as well.  In addition to writing letters to one’s local legislators, he asks that copies of all correspondence about NYS bill A07791 be sent to him. Also as he is compiling a collection of support letters and will make sure Richard Gottfried, Chairman of the NYS Assembly Health Committee, sees them.

To find your NY State Assembly member, click here.

To find your NY State Senator click here. Fill out the box in the top left corner of the page.

Send copies of all correspondence related to NYS bill A07791 to Assemblyman Abinanti at LOB 631, Albany, NY 12248.

Peanut Allergy Patch Study Underway At Centers Across U.S.

peanutscbsnewsUsing Peanut Protein And A Placebo, The Goal Is To Desensitize Children

 

February 7, 2014

NEW YORK (CBSNewYork) — Peanut allergies are one of the most common food allergies and can cause deadly allergic reactions. Doctors have tried oral therapies and allergy shots, with only moderate success. But as CBS 2′s Dr. Max Gomez reported Friday, researchers are experimenting with a promising new peanut patch.

Joshua Mandelbaum is an 8-year-old with a peanut allergy. It’s so severe that if he touches peanuts he could die. “His throat has swelled, his body has swelled. He has had hives from head to toe,” said Lianne Mandelbaum, the boy’s mother. To try to reduce his allergy, Joshua’s mother enrolled him in a study that’s testing a new patch containing peanut protein. Joshua has to wear it every day for at least the next two and a half years. Researchers want to know if low-level repeated exposure to peanuts can actually desensitize children.

“This protein gets into the outer layer of the skin, is taken up by specialized cells that then take it to the inner parts of the immune system,” said Dr. Hugh Sampson of Mount Sinai Hospital. Sampson said the idea is like allergy shots, only more gradual and without needles. The goal is to teach the child’s immune system not to overreact to peanuts.

“Trying to get them to tolerate five grams of peanut protein, which would be the equivalent of eating 20 peanuts,” Sampson said. Doctors say oral therapies are effective, but can come with side effects. Researchers hope going through the skin will mean fewer problems. Patients in the study don’t know if they have a peanut patch or a placebo patch.

The Mandelbaums think Joshua is getting the real thing because he gets a little itchy at times, but adds the discomfort is worth it. “It could save my life one day,” Joshua said. His mother said it would be life-altering to stop worrying all the time. Since Joshua and the other volunteers don’t know if they’re getting the real peanut patch or the placebo, they still have to be very careful about avoiding exposure to peanuts. At the end of the trial that doctors will very carefully test the volunteers to see how they react to peanuts. The peanut patch is being tested at 24 centers worldwide.

Skeptics add to food allergy burden for parents

Child with burgerbostonglobeBy Beth Teitell
February 11, 2014

Photo by Jessica Rinaldi
for Boston Globe
 

Thomas Estey was handed a hamburger on a gluten-free bun by his mother, Lora, at their West Roxbury home.


A lone Cheerio started the trouble one day as Lorenda Layne and her toddler Sabrina, an energetic girl with severe food allergies, were enjoying a play date with another child. Sabrina found the milk-soaked bit of cereal in the crevice of a chair, stuffed it in her mouth, and promptly broke out in hives.

Layne and her friend, both self-described “allergy moms,” were upset about Sabrina’s red welts, but something else bothered them, too: a missed opportunity.
“Why couldn’t Sabrina have had this reaction in front of our non-allergy friends?” asked Layne, of Norwell. “We know they think we’re crazy for being so vigilant.”
It takes a village to protect a child with allergies, but some parents say managing their kids’ diet has strained relations with friends and family and led to tension with parents of non-allergic classmates. Where does one child’s claim to PB&J end and another child’s claim to a Skippy-free environment begin?

The number of children with reported food allergies continues to rise — from 3.5 percent in 1998 to 5.2 percent in 2012, according to the National Center for Health Statistics. With that increase has come a heightened awareness of allergies, but some parents of allergic children say they are sometimes branded hypochondriacs or labeled as overprotective by neighbors, late-night comics, and even grandparents.

“People get defensive about food,” said Lora Estey, a West Roxbury software engineer with a toddler who is allergic to wheat, peanuts, tree nuts, and dairy. “Having a kid who can’t partake means you are always having to call it out and discuss it.

“Everyone has read a Yahoo article, or knows someone who knows someone who gave their kid a peanut every day and his allergy went away,” she added. “But the best thing about me not giving a peanut to my son today is that he doesn’t die today.”

No one wants to compromise a child’s health. But some parents of kids with allergies say they’re challenged by people who don’t understand that even trace amounts of a food can trigger a potentially fatal allergic reaction, or anaphylaxis.

Even Nana and Poppa are skeptical at times.
“I don’t want to disparage a whole generation,” said Laurel Francoeur, an allergy mom who runs a support group for parents in Lexington. “But [some grandparents] say ‘we’ve had this meal for years and no one’s ever had a problem. Why can’t he eat it this one time?’ ”
Fodder for those who preach “just try it” arrived in January, when a study published in The Lancet found that a six-month course of oral immunotherapy successfully desensitized most children with peanut allergies. Study authors warned that no one should try it on their own — a message that’s often shrugged off by those who don’t have allergic children.

Beyond suspicion that allergies can’t be fatal — particularly non-peanut allergies — some parents say they face disbelief that their children’s allergies exist at all. That’s a perception fed in part by the enormous number of Americans who avoid things like gluten or dairy for lifestyle rather than life-and-death reasons. Skepticism was likewise fueled by a 2010 study in the Journal of Pediatrics that found an overreliance on blood tests to diagnose food allergies had led to avoidance of foods that could actually be eaten.

“It makes it harder because people think we’re all misdiagnosed, that we’re hypochondriacs,” Francoeur said.
It’s been about 15 years since three young people in Massachusetts died from allergic reactions over a two-year span. Since then, voluntary Massachusetts Department of Education guidelines, parental advocacy, education, and lawsuits have prompted schools to accommodate students with food allergies, including peanut and tree nut bans, strict hand-washing policies, and allergy-safe lunch room tables. Today the call for allergy safety goes beyond schools. One New Jersey mother is campaigning to require airlines to institute a “bill of rights” for food-allergic passengers.


Still, a parent’s decision to ban certain foods may not be taken seriously, even by other family members.
“I think about this all the time,” said one mother, who asked not to be identified for fear of alienating her family. “We had relatives staying with us over Christmas, and my sister-in-law’s behavior was of the type that takes the people with severe allergies and throws them under the bus. She was banning everything. One of her sons could have eggs and wheat but no rice or soy. The other could have this but not that. I asked her how she figured it out and it seemed so unscientific. Behind the scenes my father-in-law was just telling me to feed them whatever I wanted — it wouldn’t matter.”

Pop culture often doesn’t help public perception, said Francoeur, an attorney and author of allergy advocacy books. On the Jan. 21 episode of “The Daily Show with Jon Stewart,” for example, an offending joke came in a piece satirizing the military for denying Vietnam veterans treatment. “Isn’t post- traumatic stress disorder one of those made-up diseases, like peanut allergies?” one character asked. The line was meant sarcastically, but it captured something real.

“We’ve lost a few friendships over” allergy issues, said Elise Thomas, a Kingston mother whose son is highly allergic. “Particularly with one family who felt we were being over-protective.”
In schools, that skepticism can fuel resentment. In Newton, a lawyer who has successfully tried cases aimed at forcing allergy-free policies in schools has also been approached for representation by families who are unhappy because their children can’t have nuts in school.
“My response is that we’re talking about one meal at school. Inconvenience is outweighed by the very real possibility of injury or even death that can result from exposure to even minute amounts of an allergen,” said Tim Sindelar.

In one public school in suburban Boston, the parents of a young child who was not allowed to snack on crackers marched into the nurse’s office to complain. The policy was intended to protect a classmate who had suffered an anaphylaxis reaction to wheat and was vulnerable to cracker dust, but the parents had their own perspective.

“They said they come from a 1,000-year tradition of eating wheat,” the nurse recalled, “and that their child was being deprived of his cultural heritage.”
As the number of kids with allergies rises, so do the number of parents struggling to deal with medical and social concerns the allergies can bring. Thomas says she knows people are annoyed by her vigilance.
“But I don’t think they understand the fear,” she said. “I have to trust others to help my son be safe.”
 
Contact Beth Teitell. Follow her on Twitter @BethTeitell.

NYS Assemblyman Tom Abinanti Supports Improved Access to Epinephrine Auto-Injectors in Schools

By Kristen Stewart

NYS Assembluyman Tom AbinantiTom Abinanti, a Democratic Assemblyman representing New York’s District 92, knows firsthand the importance of having an Epi-Pen® at the ready during an emergency anaphylactic reaction.

“I have a 14-year-old son with autism and it turns out he has severe food allergies,” says Abinanti.  He and his wife learned this when the boy ingested almonds as a young child.  Fortunately it was not a severe reaction and they had an Epi-Pen® handy because their pediatrician had detected what he thought was an allergy to peanuts.  (It turns out he is actually allergic to all tree nuts.)

Years later after reading an article in the New York Times about school children with undiagnosed allergies, he put two and two together.  A child could be denied access to an epinephrine auto-injector (EAI) during an attack of anaphylaxis even when one was on hand, simply because of restrictions and the EAI’s expected use.

“Given my personal story with my son I immediately realized we should have Epi-PensTM available for as many kids as possible in schools,” he says.

What followed was research, drafting, discussion and revising a bill (NYS A07791) that authorizes NYS schools to be able to stock epinephrine auto-injectors and allow the school nurse and/or other trained personnel to administer them in the event of an emergency, whether or not the individual has his or her own epinephrine prescription.

According to the nonprofit advocacy group Food Allergy Research & Education (FARE), one in 13 children under age 18 have food allergies, with an 18 percent increase having occurred between 1997 and 2007.  A07791 is particularly important as food allergies occur in approximately 8 percent of children, and 25 to 30 percent of anaphylactic reactions happen at school to students who have never had a prior attack and are not aware of their allergies.

Abinanti and his staff have encountered some concerns about the bill.  One is making sure people know the signs of an anaphylactic reaction so that a misdiagnosis doesn’t occur such as administering the EpiPen when really the child is choking.  Ensuring proper training can help ease this worry.

Another issue is funding.  “School districts are overwhelmed right now with all kinds of mandated costs,” he says.  “Even if it’s for a good purpose, what happens is you don’t get a rational discussion, you get people reacting you’re taking more money away from the teaching function of schools and putting it somewhere else.”

To address this, his bill has been written to authorize schools to stock EAIs rather than requiring them to do so.  Abinanti believes the enactment of the federal School Access to Emergency Epinephrine Act late last year will also help this bill by sending the message that the federal government has looked at the issues and is satisfied that they can be overcome.   He is also hopeful that if the bill passes and enough schools do it voluntarily, the state might be able to work out bulk contracts with EAI manufacturers to help keep costs reasonable.

While Assemblyman Abinanti is working hard on his end to get this legislation passed, he encourages concerned citizens to do their part as well.  In addition to writing letters to one’s local legislators, he asks that copies of all correspondence about NYS bill A07791 be sent to him. Also as he is compiling a collection of support letters and will make sure Richard Gottfried, Chairman of the NYS Assembly Health Committee, sees them.

To find your NY State Assembly member, click here.

To find your NY State Senator click here. Fill out the box in the top left corner of the page.

Send copies of all correspondence related to NYS bill A07791 to Assemblyman Abinanti at LOB 631, Albany, NY 12248.

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