Aug. 8, 2017 -- The death last month of a 3-year-old Alabama boy during an oral food challenge -- believed to be the first time a child died during the common allergy test -- has sparked worry and fear in families of children with food allergies.
“I think a lot of parents have not thought that this was something that could happen. I know I haven’t, and I have been an ‘allergy mom’ for a decade,” says Jamie Kaufmann of Springfield, IL.
Kaufmann has two sons -- one with a milk allergy. She runs a website and blog called Milk Allergy Mom read by 50,000 people a month. Through the site, she hosts monthly Q&A sessions with an allergist -- Robert Kaufmann, MD, of Midwest Allergy Sinus and Asthma in Illinois, who is also her father-in-law.
Dr. Kaufmann does an average of nine food challenges a month for individual patients and is doing research studies for the FDA. The duo received lots of questions upon news of Alastair Watson’s death.
According to a story in Allergic Living, Alastair died on July 30 after an anaphylactic reaction during an oral food challenge test at Children’s Hospital of Alabama at Birmingham.
Anaphylaxis is a sudden and severe reaction.
His mother contacted the magazine and said her son had multiple food allergies and asthma and he died while having the challenge test to see if he could tolerate foods containing baked milk, the magazine says. A hospital representative says federal privacy laws do not allow it to comment.
“It is my understanding that this has never happened before. I was not warned of this possibility,” Alastair’s mother, Pamela, told the magazine.
No details about Alastair’s death have been released. It’s not clear what went wrong during his test, and that lack of information is part of what is fueling parents’ concerns.
Impact Is Felt Far and Wide
Jamie Kaufmann says the news of Alastair’s death has echoed through the food allergy community.
“Many of our readers turned to us because we specialize in milk allergy and it happened with a milk challenge,” she explains. “I got several individual messages asking for Dr. Bob’s opinion, and it was incredibly emotional. We had families wanting to cancel challenges the next day or within the week.”
Kaufmann usually makes her Q&A videos available only to subscribers of a private group she created offering resources for families dealing with milk allergies. But demand for answers was so overwhelming that she posted the video on her public Milk Allergy Mom Facebook page, where it’s been viewed thousands of times. “It is the most viewed post we've ever had,” she says.
Dr. Kaufmann, who has never had a patient go into anaphylaxis during an oral food challenge, says he felt it was important to reassure families. “This is a sad case. We are still at the place where we don’t know for sure what he died of or how he died. But relative risk of death with a food challenge is very low,” he says.
Oral Food Challenge a Mainstay
The CDC says it appears that food allergies are on the rise. An estimated 15 million people, and 8% of all children, have them. Allergists commonly do oral food challenges to figure out if people are allergic to a certain food, generally after assessments by skin prick and blood tests. In an oral food challenge, the patient gets small amounts of the food they might be allergic to, with doctors watching the results.
Often, children get food challenges to see if they have outgrown certain allergies, which is common.
Baked milk challenges, like the one Alastair was reportedly having, are generally one of the first steps to see if patients can tolerate it in baked foods like cakes or cupcakes. If people pass the test, they often try drinking milk.
But oral challenges are done for many other foods, including peanuts, tree nuts, eggs, wheat, and fish. Food allergy reactions can range from hives and gastrointestinal problems to anaphylaxis, which can be life-threatening. Given that risk, oral food challenges are done at doctor’s offices and hospitals.
In the wake of Alastair’s death, the American College of Allergy, Asthma & Immunology (ACAAI), the American Academy of Allergy, Asthma & Immunology, and the Canadian Society of Allergy and Clinical Immunology released a statement calling the boy’s death a tragedy and confirming that this is the first reported fatality associated with oral food allergy challenges.
“We cannot even imagine the horror of this loss," the statement says. “While critical details surrounding this tragedy are not available, nor should they be out of respect for the family and all involved, this is an important time to address oral food challenges in general."
The groups say oral food challenges have been done for decades and are "the 'gold standard' test to determine if someone is allergic to a food.” But the president of the American College of Allergy, Asthma & Immunology says the groups understand that families now have many questions and concerns about them in light of Alastair’s death.
"It's important to realize that this option is still really important for a lot of patients and I think at this stage it makes us all the more committed to our protocols of safety," says association president Stephen A. Tilles, MD, an allergist in Washington state.
"Things typically go extremely well so it reminds us how important it is to be vigilant about the rules," he says.
Tilles says that includes being careful about measuring how much food is given at challenges and making sure patients are OK before going home.
Making the Testing Decision
Kaufmann says parents in her allergy community have good reasons to do oral food challenges, including a desire to know if children have outgrown an allergy and to expand their safe food options.
“When you send them to school, you want to know if there is a chance they could have anaphylaxis when they are away from you,” she explains.
Her father-in-law doesn’t believe anything should change at this point in light of the boy’s death. “Food challenges are still appropriate and the best way to determine if someone has a food allergy or not,” Dr. Kaufmann says. “We can test with skin or blood, but those tests … don’t tell us for sure. So we need to continue to do the food tests, and as physicians, we need to be vigilant about making sure we are doing them for the right reasons, with the right people, at the right place and time.”
Long before they heard of Alastair’s death, Ohio mother Pam Buitendorp and her son had decided not to take part in a food challenge suggested by their doctor.
Pam’s 18-year-old son, Brenden, had a life-threatening anaphylactic reaction to cashews when he was 11 after eating takeout Chinese food. Several years later, his allergist believes bloodwork shows that he may have outgrown the allergy and is recommending a food challenge to confirm that. Brenden declined.
“He says he will never forget the feeling of his airway closing. A doctor looked at him when he was 11 and said, ‘Son, this could kill you,’ ” Buitendorp says. “There’s no upside to the challenge for him. Even if he passes, he still looks at cashews as poison and will always avoid them. So if the results won’t change his behavior, why take the risk?”
Since her son is 18, Buitendorp says this is his decision to make. “I would always trust his gut. I respect his decision completely,” she says, adding that she never thought a child could die during one of these challenges, until she heard recently of the little boy that did.
“Honestly I didn’t realize it could be a risk,” she says. “The medical professionals are there, and you would think that whatever happened, they could undo and resolve the issue.”
Jenny S., a mother in Charlotte, NC, who asked to only go by her first name to protect her son’s medical information, says her 5-year-old has passed challenges to eight foods, including various nuts, soy, and egg, and has failed challenges to wheat and sesame. She says these challenges have been life-changing, as he can now safely eat more foods.
But he did require an EpiPen to stop the allergic reaction in one of those cases, so she decided to wait a year before deciding whether to challenge him on baked milk -- a decision she feels good about in light of Alastair’s death.
“I’m so glad we put it off. I was already nervous about baked milk because I believe milk is one of his worst allergies," Jenny S. says. “I always worry at challenges. It’s scary. I don’t typically worry about death, but about serious reactions. I do not want him to receive the EpiPen if he doesn’t have to.”
Dos and Don’ts of Oral Food Challenges
Allergy associations say the severity of allergic reactions is unpredictable. Dr. Kaufmann says patients react differently to different foods, so these are decisions parents and doctors need to make together.
“The patient and allergist need to talk about why you are doing this and how are you going to use the information,” he says.
In their joint statement, the ACAAI, the American Academy of Allergy, Asthma & Immunology, and the Canadian Society of Allergy and Clinical Immunology Allergy say there are guidelines for oral food challenges. They stress they should only be done if:
- A well-trained provider of food allergy and anaphylaxis management, who has performed oral food challenges, does them.
- There is an established procedure for doing the challenge.
- It's done in an office or hospital that includes well-trained and experienced staff, plenty of supervision for the patient, a plan for treatment of any reaction, and an observation period afterward.
- Life-saving equipment is on hand.
- There is documentation that the patient or family members were told beforehand of the risks and benefits of the test.
- There is a plan to explain the results after the procedure.
The story in Allergic Living says Watson had asthma and allergists warn that can also increase the risk of a reaction and its severity.
"We don’t know what was going on in Alabama but if asthma isn’t doing well, the risk of an adverse event that involves severe asthma flaring is much greater," Dr. Tilles says.
‘Isn’t a Way to Live’
Shannon Tual of Richmond, VA, has gone through four food challenges with her 7-year-old son, Gavin, who has multiple food allergies. She is on the verge of scheduling another one this month.
“He passed them all, so I may have a different perspective because of that. It doesn’t make them any less terrifying and it’s not that he doesn’t get nervous, but he sees it as an opportunity. When he passes them, it takes the anxiety away of what he can’t have. It also opens up a ton of food options for him,” she explains.
She says she trusts her allergist to tell them when it’s time to test, and she finds comfort in doing the tests at a children’s hospital. But she says she does understand the risks. “I sign a waiver every time I go in. The doctor and nurse come in and say what is possible,” she says, adding that she won’t stop doing them after learning of Alastair’s death.
“It is so sad. I feel for that family. But all these people saying they aren’t going to do their own oral challenges doesn’t make sense to me. We don’t know the details of why it happened,” she says. "This was one case. It won’t stop me from trying again. That to me isn’t a way to live.”