A Food Allergy Close Call

By Kelley Lindberg


“My son is allergic to peanuts and all tree nuts. Can you check with the cook to make sure there are no nuts in this pasta?” I asked the waitress.

“I don’t think there are, but I’ll be sure and tell the cook,” she replied.

We’d eaten at this restaurant before. Many times. And my son had ordered this particular dish before, too, which is part of why he ordered it. But we try to make it a habit to ask every single time we go somewhere. You can never be too safe, you know.

Our food came, and my son speared a shrimp and ate it. Then he spied something different in the sauce on his plate. Something he didn’t recognize. He fished it out with his fork and held it in front of me. “What is this?” he asked.

It looked like a sliced almond. Maybe it was a sliced water chestnut, I told myself. I took it and ate it. Damn. “It’s an almond, honey.”

He immediately spit the remainder of his first bite out, and began rubbing his tongue with his napkin. I tore open four anti-histamine fast-melts and he popped them in as fast as humanly possible. My mom, who was eating with us, flagged down the waitress. “There are almonds in his food!” she told the waitress, who blanched and took away the dish.

Another waitress came out and asked if she could get something else for my son to eat. No, we said, we need to just see what happens now. She brought him some water.

The manager came out, and we explained that we’d asked about allergies, the waitress had told us she’d check, and still she brought him food with almonds in it. He apologized and offered to bring something different for him to eat.

My son didn’t want anything different to eat.

He was panicking.

I’d never seen him like that before. He’s only been accidentally exposed to nuts a couple of times in his life. The last time was maybe 4 or 5 years ago, in Mexico. He had been very calm then, and calmly took his antihistamine when I gave it to him, and calmly ate the rest of his food while I watched him like a hawk, EpiPen in hand.

This time was different. This time, he was 14 and aware. He was 14 and remembering the teen girl in California who died last month after accidentally tasting a treat with peanut butter in it. He was 14 and suddenly afraid of dying from something he had previously worried about more as a mental exercise than as an actual threat, because we’ve been so careful for so many years that it became easy to take things for granted, to assume that because we were careful, he’d be fine.

So he was experiencing this accidental exposure in a whole different way for him. Suddenly it was real, and scary, and new. Even though he’s known he was allergic his whole life. This was new.

I watched him for the tiniest sign of a reaction. For a hint of hives. For a slight hoarseness to his voice. For his coloring, his breathing, his mental alertness. Fortunately, no symptoms came.

But what I wasn’t expecting was his fear. His legs were shaking up and down like pistons. He couldn’t sit still, rubbing his hands on his legs, taking sip after sip of water. I wrapped my arm around his shoulders and talked to him, tried to calm him down, talked him through the first twenty minutes. He showed no symptoms. I told him that was a good sign, but he was still shaking. I talked him through another ten minutes. Still no symptoms. Still shaking. Another ten. Still no symptoms. I reassured him that after 40 minutes, the chances of an anaphylactic reaction were probably minimal, and that we would surely have seen some reaction by then. We sat in the booth at the restaurant the whole time, because I didn’t want to move. I wanted to sit there and talk to him, keep him calm, watch his face for the slightest hint of a reaction.

Finally, after nearly an hour without a single symptom, I told him we could go. When we got home, he sat on the couch beside me for the rest of the evening. His fear had diminished, finally, but nervousness still pulsed at his edges.

As we left, the manager apologized profusely and said he would be doing new training the following weekend for his entire staff about food allergies. He told me he was also an EMT, and that he knew how serious food allergies were, and how dismayed he was that his staff had let this happen. Then he waived our entire bill.

My son and I have talked about this experience, and here are the things we learned:

1. We were very glad that his first exposure as a teenager was with me. We talked about how lucky we both were that it didn’t happen when he was out with his friends, where maybe no one else would know what to do or how to keep him calm. We talked about what he should do next time if I’m not there. Being prepared is half the battle. Even though we thought he was prepared before, he wasn’t. Not really.
2. We can never stop being vigilant, even for a second. We asked the waitress about nuts when we placed our order, but we didn’t follow up with her when she brought the food, assuming it had been prepared the same way as the last time he'd ordered it. We made an assumption that she’d talked to the cook, but that was a wrong assumption. We have to remember to ask, and ask again, every single time.
3. Because of our experience, the entire staff of that restaurant may take food allergies more seriously from now own, making that restaurant a safer place for others with food allergies who may go there. So something good can come from something bad. Nice to remember. 
4. He relearned how absolutely critical it is that he keep his EpiPens and antihistamine with him at all times. As a teen, it’s easy to get forgetful, or careless, or overconfident. This was a stark reminder of how important that little case of meds was to him right then, and how glad he was that we had it with us. I think he’ll do a better job of keeping it with him now.
5. Because we’ve been so careful to avoid nuts his entire life, he doesn’t really know what nuts can look like when they’re mixed into food. Sure, he can identify a big ol’ bin of them at the grocery store, and he knows what a peanut shell looks like, but when they’re sliced or chopped or blended into a sauce, he has no idea what they look like. We need to spend some time looking at how nuts are prepared, so that he will recognize them when he sees them. It never occurred to me that he wouldn’t recognize one in his own food.
6. Fear can undermine everything. If you’re afraid, you forget to think calmly and clearly. You may not make good decisions. You may not remember what to do. We need to work together, he and I, on taking away the fear that made him panic, leaving just enough of the fear that will make him careful. A little is good, a lot is not necessarily so. But we’re a team, and we can work through this together.

We got lucky this time. It was a close call, but fortunately, he must not have come into contact with the almonds in his dish, so he didn’t have a reaction. Or maybe the antihistamine stopped it before it could get started. Whatever it was, we are very grateful. And now we have a renewed determination to be even more careful than before.

 

Teen Dies at California Camp

By Kelley Lindberg


Tragedy occurred this week at a family camp in Sacramento, and it’s especially sad because the family did everything right, and 13-year-old Natalie Giorgi still passed away from her reaction.

Her parents were extremely cautious, well-informed, and prepared. When she accidentally bit into a camp-provided Rice Krispy Treat and tasted peanut, she spit it out, and her parents administered Benadryl. She seemed fine for 20 minutes, then began to vomit. Her parents then administered an EpiPen, and when that didn’t seem to help, they gave her another, then another.

Three EpiPens and Benadryl, and she still died. It’s our worst nightmare.

Her devastated parents are reminding all of us to be vigilant and are hoping their story will help raise awareness of the seriousness of food allergies.

For more information about Natalie and this tragedy, see “Years of Caution about Peanut Allergy Fails to Save Teen Who Died at Camp Sacramento,” from the Sacramento Bee.

All of us in the food allergy community are heart-sick at this news, and we send our most tender condolences to the family who lost such a lovely daughter.

UFAN Food Allergy Conference a Success!

Last Saturday, I attended the third annual Food Allergy Conference in Salt Lake City, put on by the Utah Food Allergy Network. The half-day conference was jam-packed full of information and ideas – after a dozen years of dealing with food allergies, I still found myself taking lots of notes and learning new things.

Dr. Robert Silge, from Salt Lake City and Taylorsville, gave a presentation that just about blew my socks off with the amount of information he crammed into a single hour. He started off by discussing skin and blood tests, how they work, and what they mean. He reminded us that those tests can tell you the chance that you’ll have a reaction, but not how severe the reaction will be. So just because your score is “low” doesn’t mean you won’t have a severe reaction to that food someday.



I lead a discussion on eating out and traveling with food allergies

Dr. Silge also talked about the role platelet activating factor (PAF) plays in reactions, and how epinephrine works. He summarized EGID and how those diseases differ from a regular food allergy. Then he moved on to talk about the various treatments that are currently being studied, and how many of them are promising, but there is no long-term evidence to show how effective any of them are long-term yet, and that the results so far show widely varying results that are highly individual for each patient. And that’s just a sample of the topics he covered. (And I was left wondering if any research is being done into how to boost the enzymes needed to break down PAFs in our bodies, so that we don’t experience anaphylaxis. I’ll have to look into that soon.)

In addition, there were other presentations on eosinophilic disorders (EGIDs), how to handle food allergy plans for school, feeding and swallowing therapy, creative cooking with food substitutions, tips for handling social situations, how to live well with a chronic health condition, and tips for adults living with food allergies and EGIDs.

I was even invited to lead a discussion called “Eating Out & Traveling with Dietary Restrictions,” which turned out to be a lot of fun, and I hope helpful for everyone who participated.



Teens like my son and his friend had their own sessions.

For the first time, the conference this year included a teen track, where teens spent their half-day entirely in their own rooms discussing topics related to their unique needs. My son and his friend were able to attend, and my son even gave a short PowerPoint introduction of himself and his allergies as an icebreaker. Although neither my son nor his friend were sure they needed to attend (“I know how to handle my allergies, Mom!”), they both seemed to have a good time and even thought of friends they should have invited afterwards. So I think the teen track was a success and will be an important part of next year’s conference.

Many thanks to UFAN board members and volunteers for putting together this amazing half-day conference. I’m already looking forward to next year!

Teens Need Cookies, Too

by Kelley Lindberg


This past weekend, we flew to California for a memorial service for a long-time family friend. While we were there, we attended the usual gatherings – at a couple of homes, the church’s fellowship hall, and restaurants.

My son is 14 now, and I’m not nearly as paranoid about being around food as I used to be when he was little and we’d go to these types of gatherings, because I know he is careful now. Gone are the days when he’d stick anything in his mouth without knowing what it was, fortunately. He’s old enough to ask, to read labels, and to make judgments on his own.

After one dinner, as people were roaming the large guest house and sitting in clusters inside and out, someone announced “Pie is ready!” Since pie is one of my son’s favorite treats, I jumped up and headed to the kitchen to make sure my son didn’t dig in before I’d verified it was safe. (I hadn’t seen him in a while, because he’d joined a card game with some other teens at the party.) When I got to the kitchen, my sister-in-law (his aunt) saw me and said, “He’s already checked it out. The pie is safe, but the ice cream isn’t, so he just got the pie.” I was pleased that he’d been so proactive and responsible.

At the other gatherings, he wasn’t so lucky with the desserts. There were brownies with nuts, Bundt cake with almonds, cookies that weren’t labeled, and other delectable-looking bites that he knew better than to even ask about. But there were plenty of other finger foods he could eat: fruit, small sandwiches, veggie trays, and cheese and safe crackers. Because he’s only allergic to peanuts and tree nuts, he was really only limited by the desserts, which is usually the case and something he’s very used to.

So when we were flying home, I was surprised when I asked him how he felt about the food at the gatherings, and he said “It felt like there wasn’t anything there I could eat.” I pushed back a little and started naming off the many things I’d seen him consume, from the sandwiches to deviled eggs to strawberries to the wheel of Brie he gleefully ravaged. “Yeah, but I couldn’t eat any of the desserts.”

That was it? Because he couldn’t eat the desserts, he lumped the whole spread into “I couldn’t eat anything”? I was a little puzzled and disappointed.

We always skip desserts when we go out. We seldom find desserts he can eat at any parties, which is why I usually volunteer to bring a dessert to potlucks. We know that desserts are the favorite hiding place of peanuts and nuts, so it’s just in our habit to skip them. Dessert isn’t a common occurrence in my house, either (sweets are an occasional treat, not an expectation). But I admit that this time I indulged in the tiny brownies and macaroons myself, while I watched him eat strawberries and Fritos. He hadn’t seemed to mind.

But apparently it bothered him. Which just goes to show that the things I sometimes feel comfortable with are not necessarily the same things HE feels comfortable with. While I was busy being pleased that there was enough safe food at each gathering that I wouldn’t have to drive him to the nearest store to get something else to eat, he was still feeling left out because he couldn’t have the brownies or cookies.

I need to remind myself that teens feel things more deeply that they show. They feel left out more easily than adults do. They can appear mature and rational on the outside, while they’re really fragile and upset on the inside.

While this doesn’t mean that I’m going to start packing little baggies of safe cookies for him everywhere we go now (like I did when he was a toddler), it does mean that I need to remember to check in with him more often at functions like this. I need to make sure he’s feeling okay about his choices, and that he’s not giving in to temptation. I need to let him know I care about his feelings, and that I’m not callously eating a macaroon in front of him just to make him feel bad. And that if there’s nothing there he can eat, I promise to find him a solution so that he doesn’t go hungry.

It was a good reminder that even though he’s taller than me and shaving now, he still needs to feel reassured, loved, and not forgotten. And he still needs a safe cookie every once in a while.

I think I’ll go bake a batch right now.

“Never Let Your Guard Down”

by Kelley Lindberg


If I could have one wish granted for this blog, it would be that I’d never have to write about another child dying because of a food allergy reaction.

But that wish hasn’t come true yet.

Last week, 11-year-old Tanner Henstra in St. George, Utah, died after accidentally popping a peanut-butter-filled pretzel into his mouth at a friend’s house. Although he immediately realized his mistake and spit it out, it was too late.

The family had been vigilant about his food allergy his whole life. The boy was educated about his allergy and ordinarily very careful. The mother is a nurse. The boy usually carried epinephrine, but for some reason didn’t have it that day.

It was just one of those momentary accidents that could happen to any of us. Within minutes, his throat and tongue had swelled, cutting off his airway, and by the time medical assistance arrived, it was too late.

The Salt Lake Tribune has an article with more information about the tragedy (“Utah Boy’s Death Highlights Food Allergy Vigilance,” Salt Lake Tribune, April 26, 2013). The article includes a quote from Michelle Fogg, president of the Utah Food Allergy Network (UFAN), who explains why teenagers make up the majority of all food-allergy fatalities: “Teenagers are bigger risk-takers and less vigilant. They get busy, it’s not cool to carry [epinephrine] around. They just get caught without it.”

A single moment of inattention, combined with a forgotten EpiPen, spelled disaster for this family. If you have a child who is getting to the age where he or she is becoming shy about carrying their epinephrine, or rebellious about avoiding the food their friends are eating, or just flat-out sick of being deprived of “normal” treats, you may want to have them read the article about Tanner Henstra, so they can see just how quickly a single accident can turn deadly. If you’re not sure whether you should talk to your younger child about this, Michelle Fogg suggests this helpful website for “Tips for Talking With and Helping Children and Youth Cope After a Disaster or Traumatic Event” on the government’s Substance Abuse and Mental Health Services Administration website.

The boy’s heartbroken mother has one message for food allergic kids and their families: “Never let your guard down.”

A Tanner Henstra Memorial Fund has been set up to help the family with funeral and medical expenses, if you'd like to offer your support. UFAN has generously donated to the fund, so more thanks go to Michelle and all the folks at UFAN for being a strong supporter of our food allergy community. And we all send our heartfelt thoughts to the Henstra family.

Peanut-Allergic Teen Dies in Massachusetts

by Kelley Lindberg


A couple of times a year, I seem to find myself reporting on another teenager who died after eating a food they were allergic to. Unfortunately, it has happened again: “Allergic Teen Dies After Eating Cookie.”

Cameron Groezinger-Fitzpatrick was a 19-year-old college student, who had come home to Massachusetts for spring break. He’d only been home for 2 hours.

According to the news report, he and his friend went out driving and bought some cookies. The friend tried a cookie, said he didn’t taste any peanuts, and then young Cameron ate one, saying “Ah, the hell with it, I’m sure it’s fine,” according to the friend. He didn’t have his EpiPens with him.

There are the first 3 problems: 1) Cameron was out of the house without his EpiPens. 2) The cookie didn’t have a label, but Cameron risked it anyway. And 3) his friend tried to predict the ingredients by tasting the cookie. (You can’t always taste allergens in a food product. The taste test is NEVER a reliable test, and should never, ever be used to determine the safety of a food. If a food doesn’t have an ingredients label, avoid it. Period.)

Then even more problems occurred: 4) The friend apparently drove Cameron home, instead of to the ER. 5) Cameron hadn’t unpacked his suitcases yet, so his mother couldn’t find his EpiPen. 6) She had one in her cabinet, but it had expired 2 months earlier, so first responders told her not to use it. (Seriously?) A neighbor brought one over and used it, but by then it was too late.

The mother was later told by a doctor that she could have used the expired one, but no one knows if it would have made a difference at that point.

In any crisis, problems and mistakes can stack up in a heartbeat. In this case, all of those problems and mistakes created an unthinkable disaster for this family.

As my friend Suzanne said when she told me about this story, “I don't know what is scarier, the fact that the teen willingly ate something that he had no label for or the mom being quoted to say, ‘I didn't know you could die from nut allergies.’”

So if we can learn anything from this awful experience, it’s that we need to remind our kids (and ourselves) that food-allergic people simply cannot let our guards down, even for a minute. We must stay vigilant, keep our medications with us, read ingredients labels each and every time, and never rely on blind luck. It isn’t really all that difficult to do. But convincing teens to do it seems to be a challenge sometimes.

Once again, I feel compelled to remind us all that most food-allergy deaths occur to teen boys who don’t have their epinephrine auto-injectors with them. Now that my son is a teenager and running with a very social group of friends, I worry more about making sure he has his epinephrine with him. I also remind him about food every time he leaves the house. I know he’s probably tired of hearing me nag him, but I know he needs constant reminders even if they are annoying. Much as we love ‘em, teen boys just aren’t universally known for their common sense and perfect memories.

So I remind him, and make sure he has his meds, and show him articles like this one that really hit home. My heart goes out to Cameron’s family and friends. And I hope that his experience will help reinforce our own children’s commitment to staying safe.

Another Heartbreaking Food Allergy Death of a Teen

by Kelley Lindberg


It’s a tragic way to start a new year. The Daily Mail website reports that William Luckett, a 15-year-old boy in Great Britain, died on December 29 after eating two bites of take-out food from a Chinese restaurant. He ordered spare ribs that were cooked in a peanut sauce. He did not have his EpiPen with him. (See “Nut Allergy Teenager, 15, Dies After Two Bites of Chinese Takeaway Spare Ribs Marinated in Peanut Sauce.”)

The family says he had ordered them before without problems, and that they didn’t know the ribs were cooked in peanut sauce. The restaurant says they were clearly labeled on the menu as having nuts. The restaurant owner even added, 'If a customer has allergies then they have to tell us and we are very careful not to include what they are allergic to in the dish. I know how important it is because my son has allergies.”

How awful for the boy’s family. And how awful for the restaurant owner, cook, and servers.

The Daily Mail also reports that another U.K. teen, 18-year-old Emma Egerton died after eating Indian food cooked in nut oil and containing ground almonds in December. And another student, 22-year-old Preethi Koshy, spent three days on a life-support machine last year after eating a “nut-free” cake that actually contained 55% peanuts. (Fortunately, Koshy recovered.)

These deaths and near-deaths are tragic, and I hope that someday, with new advances in food allergy treatment and cures, these stories will stop. In the meantime, if there is anything we can learn from them, it must be to:

1. Never assume, and always check! (Even if you’ve eaten that food before.)

2. Always carry your EpiPen.

We’re often told the most common victims of anaphylactic death from food allergy are teenagers who aren’t carrying EpiPens. If you know any teens who are food allergic, please show them this article. Carrying an EpiPen may not be “cool” and it might be a little inconvenient, but it’s not nearly as inconvenient as dying. Please don't leave your friends and family mourning a promising life cut short.

The hearts and prayers of the entire food allergy community go out to the families of these unfortunate young people.

Two Food Allergy Deaths in Atlanta

by Kelley Lindberg


Last month, in two separate incidents, two different teenage boys in Atlanta died from apparent allergic reactions to food.

This is the type of news parents everywhere dread.

The first boy was a 15-year-old who was shopping with his aunt. While she shopped, he went out to her car to grab a chocolate chip cookie. He didn’t realize there were traces of peanuts in the cookie. After eating the cookie and realizing what it contained, he ran to a nearby McDonalds to rinse out his mouth, then took an over-the-counter medicine. Neither did enough to stop the reaction. By the time he was transported to a medical center, then flown to a hospital, it was too late. He didn’t carry an EpiPen even though he knew about his allergy, because he thought he was cautious enough. (“Teen Dies After Eating Cookie Containing Peanut”)

The second boy was a college student at Kennesaw State University, who apparently had a reaction to something he ate at the school’s Commons Student Culinary Center. He ate a meal there, then left. Then he returned to the Commons “in distress” and called 911. By the time he got to the hospital, he was dead. According to people who knew him, he was aware of his allergies and had used EpiPens “often.” But no one knows why he didn’t have one with him at the cafeteria that day. (“KSU Student Dies After Apparent Allergic Reaction”)

My heart bleeds for those parents, families, and friends. I can’t imagine anything worse.

Members of the American Academy of Allergy, Asthma & Immunology and the Food Allergy and Anaphylaxis Network (FAAN) maintain a registry of fatalities from food allergy reactions so that they can try to identify patterns in these deaths, such as the type of food, where it was consumed, and the age and gender of the affected individual. The registry isn’t a systematic or complete record of all fatal food-induced allergic reactions in this country, but it helps show where more education is needed to help prevent these fatalities.

One of the patterns they’ve noted multiple times is that the largest percentage of fatalities is usually teenage boys who were allergic to peanuts or tree nuts, who consumed food away from home and didn’t have their epinephrine with them at the time.

Neither of the boys in Atlanta had an EpiPen.

As my own son enters his teenage years, I worry about him more and more. He’s forgetful. He’s image conscious. He’s always in a hurry. He doesn’t want to be bothered by having to carry things, keep up with things, or wear something bulky on his belt.

He’s a typical teenage boy.

That’s bad enough, by itself. But when a teenage boy has a severe health issue that he has to maintain, whether it’s food allergies, diabetes, epilepsy, or any other disease, it gets that much worse.

The only thing I can do is keep educating him, keep reminding him of the severe consequences of not taking his EpiPen with him everywhere he goes, show him stories like these, and engage him in finding his own solutions to the problem of how to carry those EpiPens, how to ask about ingredients, how to say no. I have to do everything I can to prepare him and educate him, and then trust him to make the right decisions even if I’m not there.

But I still hug him tighter every day.