FAAN Teen Summit kicked off on clinical trials. Dr. Hugh Sampson, the famous allergist and researcher from the Mount Sinai School of Medicine, explained in a video how clinical trials for food allergy desensitization work and why they’ve so far proven very effective.

For those unaware, the continuing clinical trials are studies being done to see how individuals can be cured of food allergies. Currently, they use the process of a food challenge, in which someone eats a very minuscule amount of what they are allergic to, and then gradually eats more and more of the food until they can eat a full serving of what they’re allergic to. With severe food allergies, this desensitizing process can take between two and three years.

While some students expressed nervousness about trying such a trial, Kendall Hollinger, 14, said she would definitely go for it. “If I would be eligible, I would totally do it, even though it’s really, really scary. It would be great to grow out of an allergy,” said the student from California. “I would want to be the person who’s brave enough to go against everything they’ve gone against their whole life and grow out of an allergy.”

Friday night was a fun casino evening. And then on Saturday, it was down to food allergy business. The teens and the 99 parents in attendance split into two separate groups, then among the teens there were breakout sessions for: Middle School, High School & College, and Siblings.

Kendall, 14 on clinical trials: “I would totally do it,
even though it’s really, really scary.”

There was a famous face in the crowd at the High School & College session: Kenton Duty, the 16-year-old star of the Disney show “Shake it Up”. Yes, even the famous aren’t immune: he is allergic to cocoa (chocolate). Kenton says: “My favorite topic was the psychiatrist because it was interesting to hear the discoveries of how anxiety and reactions were influencing the teens. He wrapped it up well.”

The Teen Summit provided a Saturday Night Social for the teens only, featuring good and loud music – and dancing. On November 20, the last day of the summit, the teens and adults came together for a Q&A session. Questions were directed alternately to the teens and the adults, and various audience members offered answers.

Next: Peer Pressure

Profiles of the Participants

Julia, 16
• Grade 11
• Allergies: Milk and dairy, tree nuts; has asthma
• Lives in: Toronto
• Reactions: Has had more than 5 “Milk is in everything and hard to avoid; tree nut isn’t as hard.”
• Auto-injector: EpiPen in her backpack

David, 15

• Grade 10
• Allergies: peanuts, soy, raw apples; has asthma and oral allergy syndrome
• Lives in: Toronto
• Reactions: 3 anaphylactic reactions when younger, asthma sometimes flares
• Auto-injector: in his backpack, also carries puffer

Dylan, 16

• Grade 11
• Allergies: peanuts
• Lives in: Aurora, Ont.
• Reactions: None, but positive skin test and oral challenge at age 9
• Auto-injector: always on him

Jason, 18, Dylan’s brother

• Started university this fall
• Allergies: peanuts, tree nuts
• Lives in: Aurora, Ont.
• Reactions: 1 severe, anaphylactic reaction: “It’s not fresh in my head; I was 18 months old.”
• Auto-injector: always on him

Gardner, 15

• Grade 10
• Allergies: peanuts, tree nuts, penicillin
• Lives in: Bowmanville, Ont.
• Reactions: 1 anaphylactic episode at age 1 1/2
• Auto-injector: clips on two-dose Twinject

Pat, 17

• Started college this fall
• Allergies: shellfish
• Lives in: Aurora, Ont.
• Reactions: 1 minor; throat tightened after eating shrimp. Skin test was positive.
• Auto-injector: only carries EpiPen when eating at restaurant

LIFE IN HIGH SCHOOL

Gwen Smith: Are teachers and fellow students aware of your
life-threatening allergies?

Gardner: In senior public school, everyone knew I was allergic. You
go to high school, and only the same people know. And I don’t really
tell a lot of people about my allergies. The teachers also know.

David: My close group of friends knows, that’s probably it.

Dylan: In Grade 9, I didn’t want to tell anyone, it was that fitting
in thing. But this year, I’m telling more people. I get paranoid some
days because I’ve been noticing more and more people eating peanut
butter stuff from the vending machines: Snickers bars or Reese’s
Pieces.

Pat: People don’t bring shrimp to school, so it really doesn’t come
up, except when all my friends go to the Mandarin [restaurant], I
can’t go.

GS: Have you noticed any change with the implementation of Sabrina’s
Law in Ontario, which requires schools to have a plan in place to
protect anaphylactic students?

David: Absolutely nothing. If I were to ask anyone about Sabrina’s
Law, I doubt anyone would know. I haven’t heard a thing about it in
my school.

Jason: The only thing that changed is that the principal called me
down and asked me to bring an EpiPen to put in the school office. And
he asked everyone known to be anaphylactic to do the same. We all
kind of ignored it because there were a lot of us – two pages of
names – and how many EpiPens do they need in one office? There were
people I knew on the list that I didn’t know had allergies – it was
really weird.

Usually I just let teachers know that I’m allergic and ask that if
they see people sneaking in food, to make sure that they’re not
eating it in class. The main thing that concerns me is: was the
person sitting at the desk before me eating something.

Julia: My teacher knew about Sabrina’s Law, so I asked if she was
going to inform other teachers. And she said, ‘Do you want to help
me?’ So [in November 2005] I had to talk in front of all the teachers
and tell them how to use an EpiPen and what symptoms to look for.
None of the teachers had been trained.

Also, I don’t eat from the cafeteria; I bring lunch. I can’t eat
what’s in there with the cooking oils, cheese; there’s so much
contamination.

Gardner: My school is fairly peanut-free. Our cafeteria has a sticker
on it calling it a “peanut and tree-nut-free area”. In February,
though, I started to get, like, severe paranoia. Every time I ate
something, even if I took a bite of stuff I brought from home, I
thought my throat was closing in on me. It got bad to the point that
I got scared off eating, so I don’t eat at school anymore.”

GS: Did it feel like a reaction?

Gardner: I don’t know, because I’ve never had one [he last reacted as
a toddler]. I get up early and have a lot for breakfast and then eat
when I get home. I don’t think it was too healthy, though, because I
lost about 10 pounds after starting high school. And then my system
got used to it and the weight got back up.

Adil Mamodaly: So what do you do at lunchtime?

Gardner: I’ll still sit with my friends, and hang out, have a drink.

AM: Is there anything you’d like to see happen at your high school on
allergies?

David: I would just like to see the principal make a reference to it
in one of her speeches because very few people know about it at my
school. If I were to ask maybe 200 kids, I’d be very surprised if
even 10 of them knew what anaphylaxis was.

Julia: For me, it’s the follow-through. I did that teacher training,
I went away and now I’m regretting not following through. But I think
they should have followed through.

Jason: Yeah, the follow-through. They also hadn’t talked to me [about
anaphylaxis] since. When there are people in your school who can die
that easily, it should be a pretty big priority.
Since I started going to high school, they hadn’t mentioned it
[anaphylaxis] at all. Well, I had one teacher mention to the class
that I was allergic, but other than that, it was me mentioning it to
the entire class. There’s a complete lack of awareness at the high
school level, as far as I can tell. The administration and teachers
might know about allergies, but they don’t make sure the students
know. That would be the whole point – I don’t hang out with the
principal at lunch, I hang out with my friends.

AM: Would you want the teacher to explain anaphlaxis in general or to
point you out?

Jason: I don’t mind being singled out.

David: The more you can say about it (anaphylaxis), the better. I
don’t care if you single me out. In fact, I’d encourage them to
single me out. If no one knows what’s wrong with me and I’m on the
floor, nothing is going to happen.

WHEN news surfaced that 15-year-old Christina Desforges of Saguenay, Quebec, had died of what appeared to be an anaphylactic reaction to a kiss from a boyfriend who had eaten a peanut butter sandwich, the story travelled from Canada to Mexico to South Africa and on to Europe.

The reason for the media interest was simple: it seemed incredible that death could come from the tiny amount of peanut encountered in a kiss. Not only that, but the young man had eaten his sandwich about nine hours before the kissing started.

The investigation into Christina’s death in November, 2005 is raising questions about whether anaphylaxis and the kiss were to blame – or, at least, solely to blame. In early March, Coroner Michel Miron told the Quebec media that Christina did not die from peanut exposure through a kiss, but added that he had further tests to complete.

At press time, Miron was still finalizing his report and was considering asthma as the likely main cause of death. [*SEE “Update” at end of this article.] However, a leading Canadian allergy expert has toldAllergic Living that it may be difficult to entirely rule out anaphylaxis, the severe food allergic reaction, because the condition is inter-related with asthma.

But whatever the final pathology report concludes, what is certain is that Christina was having great trouble breathing at her boyfriend’s home in the early hours of November 21. She was asthmatic and allergic to peanut.

If anaphylaxis or asthma or both were the cause of her respiratory distress, Allergic Living has learned this as well: contrary to the news reports, Christina did not get epinephrine promptly. “It really was not ‘immediately’,” confirmed Dr. Nina Verreault, the Saguenay allergist working with the coroner. “It was more like ‘late’.”

This is not the only recent allergy-related teenage tragedy. A month after Christina died, Chantelle Yambao of Edmonton, who was severely allergic to nuts and peanuts, ate a store-bought Nanaimo square and began to feel shortness of breath. Thinking she was having an asthma attack, the 13-year-old used her bronchodilator (or puffer).

Hours passed on December 23, 2005, before she let her mother know of her breathing trouble. Then Chantelle collapsed. Her parents phoned 911, but the teen was well into a serious reaction. She lost consciousness and was put on life support in hospital. She died a few days later.

Both of these tragedies have left families shattered, and in both there are important lessons and disturbing parallels. For instance, each of the girls was asthmatic, food allergic and a teenager, automatically putting her into the highest risk category for fatal reactions.

While Chantelle’s death is considered the more evident case of anaphylaxis (to peanut or nut in the square she ate), each girl assumed she was having an asthma attack. In the panic of breathing distress, both Chantelle and Christina reached for a puffer, but neither administered an epinephrine auto-injector, which would have been effective in an anaphylactic episode and also in severe asthma.

In an acute asthma attack, “we tell people to use their bronchodilator, four puffs every 15 minutes,” says Dr. Susan Waserman, president of the Canadian Society of Allergy and Clinical Immunology and an allergist practising in Hamilton, Ontario. But asthma is also often a key manifestation of anaphylaxis, and a puffer is not sufficient to halt this type of reaction, which can have symptoms ranging from breathing trouble to vomiting or cramps, hives and itchiness, or even a potentially fatal drop in blood pressure.

Waserman is waiting to see the results of the coroner’s report in Christina’s death, but as an allergy expert she can say that “finding something that looks like a death from acute asthma can in fact be part of anaphylaxis. “It would be difficult to rule out anaphylaxis; it might not be an ‘either-or’ scenario.”