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"I wanted to sit with my good friends, but I could not," said the 10-year-old. "If you're a child and you have a food allergy, it's harder for you, you miss a lot of things that other kids can have, and I always want to try some things that I can do. ; peanuts ".
Mom, Monica Glover, said the family had discovered Ellis' peanut allergy when she was around 3 years old. A cutaneous reaction around the mouth after she received food containing a small amount of peanuts. "We were lucky to have discovered it as well – it was a mild reaction," Glover said. A doctor confirmed the allergy by tests.
The discovery was "painful," Glover said. An accidental exposure to peanuts occurred, resulting in "severe stomach cramps and vomiting," she said. "Essentially, we have to live all the time in fear of exposing Ellis inadvertently to peanuts and having a potentially life-threatening reaction."
Glover took the opportunity to participate in a study on the safety and efficacy of an experimental treatment that could protect his daughter from accidental exposure to peanuts. Despite the risks, it was "a gift", she said, adding that her family hoped their efforts could help "many more children".
The risk paid off: the researchers found that two-thirds of the children participating in the study were able to eat the equivalent of two peanuts without any symptoms after the experimental treatment of several months.
Ellis is one of the majority of children for whom the treatment works. "It has been a huge success," said his mother.
Not a cure
"It does not just make the allergy go away," said Vickery. "The goal is not to get them to no longer be allergic to peanuts and allow them to eat what they want."
"When I see them, I tell patients that I hope patients will have access by the end of next summer, something like that," Vickery said. He added that, although the study has proven the efficacy and safety of treatment only in children, adults would probably benefit in the same way.
How did the study work?
To test the experimental treatment, 66 research centers in 10 countries recruited 554 participants aged 4 to 55, all with peanut allergy. Most – 496 participants – were between 4 and 17 years old.
"We have been extremely knowledgeable about the whole process," Glover said. "You start at a very low dose and you progress, you take it to the monitored hospital, and then you take it home every day."
Two-thirds of the study participants received treatment in increasing amounts every two weeks until reaching the maintenance stage, when they received the equivalent of one. peanut a day. The other participants received a placebo. At the end of the study, after one year, all participants were faced with an "exit challenge": they ate, under the supervision of a doctor, the equivalent of two peanuts.
Two-thirds of the treatment participants were able to tolerate this discharge dose without serious reaction. Half tolerated even twice that amount: a dose of four peanuts.
Overall, participants had fewer side effects during the study than the researchers expected. "It's intuitive that this process triggers some allergic symptoms in many patients," said Vickery. A third ended the study with no more than mild side effects, such as upset stomach.
Ellis had stomach cramps and vomiting repeatedly during the study, usually on days when his dose was increased to increase his tolerance. "Having stomach cramps was not doing me well," she said. However, she usually vomited and cramps disappeared quickly.
Once, she felt her throat tighten and "it was harder for me to breathe," she said. She had gone into anaphylaxis, a serious allergic reaction. Hospital staff immediately reacted and gave him an epinephrine injection. "I felt safe with all the doctors and nurses around me, they can help you overcome that," she said.
Just over 11% of children dropped out of school because of serious side effects. Of the children receiving the treatment, 10% needed emergency epinephrine during the exit test, compared to 53% in the placebo group.
"These treatments really have the potential to transform people's lives," Vickery said, "and I've seen it happen first-hand: the feeling of relief [families] get when a child becomes insensitive. "
Try to be bitten & # 39;
"That's what many families call to try to be careful. it's not that you cure the allergy, nor that you will be able to eat peanut butter sandwiches, "said Sicherer, who did not participate in the study. "It's really just to have a better threshold so that if you accidentally eat something that contained a bit of peanut, maybe you would not react or that the reaction would not be so bad."
Although immunotherapy treatment is simply about gradually increasing your peanut tolerance, you may have a serious reaction at home. "It's not something to try at home," Sicherer said.
Aimmune turned peanuts into a "pharmaceutical grade" product, he said. "Most people see it as a medicated feed." Doctors and patients know exactly how much you get, he says, "and it's important because if you react, for example, to a 50th of a peanut, you do not want to go wrong." 10 peanuts. "
Assuming the treatment gets approval from the FDA, Sicherer said, the conversation between doctors and patients will be: "Is it better to avoid food, to ask many questions at the restaurant and to be really cautious, or doing something like this and not yet eating food and asking questions in the restaurant, but at least do you know that you have a safety valve? "
There are more than a few caveats about the treatment regime. On the one hand, it's "a commitment," he said. You can not take a dose before exercising, you can not skip doses, or you could have a serious reaction when you take it back.
Glover noted, "It's a little disturbing, you have to do it every day, and we usually take it after dinner." After giving the medicine, she added, parents must carefully monitor their children, preventing them from becoming too active or too hot.
Sicherer said, "The family that does this really, really has to be a true follower of the rule, it is not easy." It would always be worth it, he said.
If this ended up being the first approved treatment, if it was covered by insurance and if the details of its effectiveness were defined and if the risks and benefits were clear, "it would be so amazing, had something like that before" , he said.
"It's not all we hoped for, but it's still fantastic to be able to raise the threshold of a peanut to a few peanuts or more," said Sicherer, who believes that other products against allergy will be developed in time. "I can tell my patients that this could be the right thing for them, but otherwise we are considering things that could be easier and better in the future."
Glover acknowledges that "this is not a perfect solution, I would say that this study required work, in terms of time." Yet, if it had taken twice as long, she would have done it: "It's peace of mind."
Even though she does not like the taste of the drug, Ellis also thinks it's worth it. "It's definitely better," she said to another child allergic to peanuts: "You know you can be with your friends when they have peanut butter."
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