A U.K. study of 130 anaphylactic deaths highlights the difficulty in making such a determination. In his 2000 report, Dr. Richard Pumphrey of the Immunology Department of St Mary’s Hosital in Manchester found that there were no observable signs of anaphylaxis in many of the deaths. He concluded that “in the presence of a typical clinical history, absence of postmortem findings does not exclude the diagnosis of anaphylaxis.”
Waserman stresses the importance of vigilance with both asthma and food allergies, as both can be fatal. Asthma must be controlled, often with a daily regime of medication. She advises erring on the side of using the epinephrine auto-injector if an asthmatic showing breathing distress is also food allergic.
If that individual has already used a puffer and “doesn’t seem to be responding and you’re waiting for the ambulance, give the adrenaline (epinephrine),” she says. There are very few contraindications to using epinephrine.
The absence of that lifesaving drug in the cases of Chantelle and Christina has a chilling familiarity. The late Sabrina Shannon, who became the inspiration for Ontario’s new law to protect anaphylactic students, collapsed at her high school in September, 2003, after telling the vice principal, “it’s my asthma.”
He had sent someone to retrieve her EpiPen in case food was the cause. It was: the fries she had eaten at lunch had been accidentally exposed to cheese curds – and dairy was one of her allergy triggers. Sabrina had had other anaphylactic episodes, but that day even a well-prepared teen confused the symptoms, with tragic results.
“It’s critical that these kids understand if they’re eating something and they suddenly can’t breathe, they should be treating for a food allergy reaction, an accidental ingestion,” says Anne Muñoz-Furlong, founder and CEO of the Food Allergy and Anaphylaxis Network. “We need to teach them not to be afraid. There’s no harm in giving epinephrine if it’s not needed, but the results of not giving it if it is needed can be catastrophic.”
Muñoz-Furlong notes that in a 2001 U.S. study of 32 anaphylaxis deaths, 54 per cent who died were kids aged 10 to 19, and 96 per cent of them “had asthma as part of their allergic profile.” Meanwhile, in an Ontario study of anaphylaxis deaths, most of the 20 who died of peanut or tree-nut allergies were again adolescents.
Another lesson consistent in the recent deaths and the studies is that teenagers need to learn to speak up about their allergies and asthma. Chantelle tried to treat what she perceived as an asthma attack on her own, while Christina hadn’t told either her boyfriend of 2 1⁄2 months or other friends staying over at his family’s house that she had an allergy to peanut.
Muñoz-Furlong says that some teenagers in the U.S. fatalities study “went off and quietly tried to take care of themselves, and the reaction overcame them. Others collapsed in front of their friends and the friends had no idea what to do.”
But if the peril to allergic teenagers is the recurring problem, the question becomes: How do you stop the pattern? Support groups in Canada and the U.S. say food allergic teenagers and those around them must be educated on the allergy/asthma basics and the use of auto-injectors and puffers.
But beyond that, they are looking to get teenagers talking, and involved. To that end, FAAN has come up with some novel initiatives, and has made teenagers its primary focus for 2006. The organization has set up a teen advisory council that will be holding discussions with allergic peers around the United States. The intent is to address teenage concerns about how allergies affect their social lives. FAAN has also revamped its teen website (www.fanteen.org),
making it appealingly interactive.
Reactions to the news of Christina’s death showed early signs that such initiatives can have an impact. Following the broad attention that story received, FAAN was inundated with teen e-mail. “It came not only from those who had allergies, but from their friends, who were worried on behalf of someone that they knew,” she says.
And then there were those who had very confidential queries about allergic acquaintances: “They were asking questions of FAAN of how to kiss such a person. They were planning that first kiss and they were quite embarrassed and wanted their privacy protected, and we respect that.”
In the larger picture, Muñoz-Furlong figures that by having FAAN’s site become a place where teens can go for practical, straight-forward and confidential personal advice, “we may be able to save some lives.”