Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well.
Warning: This is a very long post. I could have divided it into ten separate essays, but I like the idea of a deep dive, the way I experienced the event. Feel free to skim or skip it if the material doesn’t interest you. For people thirsty for clues about how to get the best care for their food-allergic child, this is news they can use.
Here we go:
FARE, a national organization devoted to food allergy research and education, organized the event for November 2-4, 2018, in Arlington, VA.
Overall, FAREcon was an excellent conference. I wanted to attend at least two of the sessions at every time slot and never regretted my choice. There were hundreds of people there and, by my estimate, one-third were teens. My own teen came down with a terrible cold on Friday and missed the whole thing, which made me incredibly sad because I think he would have loved it. But I took copious notes, as you’ll see, and will share them with him, too.
Another great source of notes: the #FAREcon18 hashtag on Twitter. My friend Joyce Lee, MD (@joyclee) live-tweeted throughout both days and her feed is worth a look if you have a chance. Here’s her collection of tweets. And here’s mine.
Saturday, Nov. 3, 2018
9am: Research panel
Quoting from the agenda:
- Private Practice Oral Immunotherapy, known as “private practice OIT,” presented by Paul Detjen, MD, a board-certified allergist and immunologist in private practice in Kenilworth, Illinois.
- Chinese Herbal Therapy for Food Allergies, Eczema and Asthma, presented by Xiu-Min Li, MD, Professor at New York Medical College
- Sublingual Immunotherapy, also known as “allergy drops”or SLIT, presented by Mary Morris, MD, ABIM
- Microbiome Research and Treatment, presented by Cathryn Nagler, PhD, Bunning Food Allergy Professor and Professor of Pathology, Medicine and Pediatrics at The University of Chicago.
- Standardized Oral Immunotherapy, known as AR101, an investigational drug developed by Aimmune Therapeutics and regulated by FDA to treat peanut allergy, presented by Brian Vickery MD, Director, Food Allergy Center at Emory University and Children’s Healthcare of Atlanta.
- Epicutaneous immunotherapy, or EPIT, is an immunotherapy in clinical trials that delivers allergens to the immune system through intact skin using investigational Viaskin patch technology developed by DBV Technologies; presented by Terri Brown-Whitehorn, MD, Attending Physician with the Division of Allergy, the Center for Pediatric Eosinophilic Disorders at Children’s Hospital of Philadelphia.
Each of these therapies and clinicians are “findable” online, and complex, so I won’t provide a summary here. The Q&A was interesting because of the real-world questions asked. For example: Q: Can a kid wear a peanut patch and attend a nut-free camp? A: Yes. Q: Can a nasty-tasting testing food be improved without affecting its efficacy? A: Yes Q: Is there an age limit for OIT? For most clinical trials, yes. For private practice, no, but they say that it’s their observation that it is very hard for teens and young adults to adhere to the complex, daily regimen. Overall, about one in 5 families drop out because they travel, the kids gets sick, they have to skip multiple days, they make mistakes, etc. Teens are busy and don’t always listen to their parents or look out for their own best interests long-term (understatement alert).
I appreciated Dr. Vickery’s sensitive acknowledgement that oral immunotherapy (OIT) can trigger reactions and therefore increase the anxiety burden on kids and families. He said that is a risk that should be taken into account before starting OIT.
My take-aways: Personally, I’m not sure we are going to pursue any of the cutting-edge therapies, but it was great to know they are out there.
It was sometimes hard to listen to the promising work being done for all the kids who are much younger than my kid (which turned out to be a common feeling among the older parents in attendance). Our kids seem to have been born at the wrong time for food allergy. We were told to avoid peanuts for our eczemic babies, which scientists now acknowledge was a mistake. We were told to introduce foods one at a time, which scientists are now finding is not necessary and may even contribute to the development of food allergies. And we are now told that our kids are too old for most of the clinical trials and promising therapies – and certainly too old for the intriguing preventive strategies that are coming out.
11:10am: Are Bacteria the Cause (and Cure) of Food Allergies?
Cathryn Nagler, PhD, presented a Microbiome 101 overview and then talked about some of the most promising leads that she and her colleagues are pursuing. My recommendation is to check out her lab’s website if you’d like to go in-depth on this topic.
I was fascinated to learn more about our gut and skin microbiome and how it interacts with our immune systems. I learned, for example, about the “founder species of microbiota.” Babies born vaginally have a lifelong advantage over babies born by C-section because their gut is colonized by the good bugs that live in the vaginal canal – but that benefit is canceled out if the mother receives antibiotics during birth. I also learned that
scientists Dr. Nagler jokingly calls twins “littermate-controlled humans” and they are ideal for research. [Updated thanks to her comment below.]
Dr. Nagler discussed “bugs as drugs” – if you introduce a certain “bug” (bacterial metabolite) then you can prevent and even cure milk allergy in mice and they are moving to human trials. Here’s a video that lays out this work. During Q&A she said that this approach could work with all Top 8 allergens since they are all “resistant to degradation” (can’t say I understand why, but it was intriguing to hear).
My take-aways: There’s not much we can do for our older kids with food allergies except to feed them recommended amounts of dietary fiber. That’s the key ingredient for a healthy gut.
During Q&A, Dr. Nagler recommended against home experimentation like fecal transplant, buying microbiota from Amazon (the beneficial “bugs” all die when exposed to oxygen and nobody has successfully suspended them in a polymer yet – that’s what she’s helping to develop as a product). She also recommended against self-directed diets to “cure” food allergies (and told a story about a food-allergic grad student who devised her own diet of 100% fermented foods to try to jump start a healthy gut – she ended up with horrible eczema and no positive change in her microbiome or allergies).
Confession: I got tears in my eyes when FARE sent a note in advance about how they planned to handle food in general and lunch in particular. Never have I been in such a thoughtful environment when it comes to food allergies. Of course, right? But really, they thought of EVERYTHING and made it gracious, easy, and delicious. There was a “burger bar” (beef burgers, chicken breasts, Portobello mushrooms) with clearly-labeled bowls of separate ingredients for toppings and servers wearing gloves standing by with 3 different kinds of buns. And there was a room set aside for people who wanted to bring and prepare their own meals, with refrigerators and microwaves.
The whole experience was designed by Joel Schaefer, who helped Disney become the allergy-friendly destination that it is today.
1:30pm Behind the Scenes Tips for Safe Dining
Joel Schaefer, co-founder, Your Allergy Chefs, author of “Serving People with Food Allergies, Kitchen Management and Menu Creation” and former Special Diets Manager of Walt Disney World gave a detailed presentation about how a restaurant kitchen functions. He explained how he adapted NASA’s concept of HACCP (pronounced “hassip”) for culinary settings:
Critical Control Points
Meaning: Identify all the possible hazards. Analyze each one. Create controls for each one to minimize the risk of mistakes.
For example: He advises restaurants on how to set up their kitchens to be safe, such as: Don’t store the messy tuna on the far side of the deli sandwich counter because when someone scoops it out, they are likely to drip on the ham or turkey slices. Use color-coded cutting boards so there is never a mistake of mixing dairy with non-dairy, etc. This part of the presentation was extremely detailed and I didn’t capture it all in my notes, unfortunately.
He advised us to go to a restaurant when it is not busy and ask questions about how they store food, whether they use the same grill for hamburgers as they do for fish, whether they have a dedicated fryer just for fries (and tons more questions). Perhaps most importantly: Do you understand the seriousness of food allergies?
When ordering at a deli, ask: Can you please get my lunch-meat fresh from the walk-in? (That minimizes the chance of the dripped tuna fish, peanut butter, or whatever else.) If a waiter doesn’t seem to understand what you’re asking for in terms of accommodations, ask for the manager who should have more time to spend with you.
For special occasions when you know you have to eat at a restaurant: Have an idea about what your kid eats or may want to order before talking with the chef. He or she will hopefully welcome the chance to host you and your family and make accommodations. Be calm. Go in with solutions.
An audience member asked: How do we ask in a way that doesn’t upset or offend the server? His answer: If they are upset by your questions, walk out. Don’t eat at a place that doesn’t welcome you. It’s just not worth it.
He took all the unanswered question cards and promised to write a blog post answering them. His blog: YourAllergyChefs.com/blog
My take-aways: This session was meant to be empowering, I think, but was quite frightening. There are so many variables, so many points of failure, so many aspects to dining out that I had never thought about or asked about before. He takes an all or nothing attitude about safety: If they don’t have a dedicated fryer for fries, do not eat the fries. If they don’t have a dedicated grill for meat (with no fish ever) then do not accept their suggestion to cook your steak on a piece of foil.
2:30pm A Seat at the Table: Recent Developments in Food Allergy Litigation
Disability rights lawyer Mary Vargas of the litigation firm Stein & Vargas LLP gave a compelling, jam-packed presentation about the food allergy cases she has been involved with in recent years.
She opened her talk by telling us (all adults in the room) that she had just spent the previous session with all teens and they hadn’t gotten further than the first case because the teens turned into an angry mob (not at her but at the injustice of it). She said it was inspiring to see the teens coming into their power and realizing that the law currently does not recognize their status as a fully protected class under the Americans with Disabilities Act (ADA). Then she told us about the case: J.D. vs. Colonial Williamsburg Foundation. And yes, it made us mad, too, but we let her go on with her presentation.
Again, this talk was so detailed that I didn’t capture it all in my notes, but I did find some source material online. Here’s the original complaint, which describes how J.D. was treated shamefully by the staff of a restaurant in Colonial Williamsburg.
Essentially, on a middle school field trip, he paid for a meal in order to have a seat at the table with all his classmates, but because he didn’t have confidence that they could provide a safe meal he planned to eat his own food. When his dad told the server not to bring J.D. anything, the manager and chef came out, words were exchanged, and J.D. was eventually made to eat his dinner out in the restaurant’s backyard in the rain. The District Court held that whether J.D. has a disability is an issue for jury to decide. The Court’s dismissal was due to finding it was not necessary for the restaurant to allow J.D. to eat his safe food in order for him to have equal opportunity to participate. The case is on appeal to the Fourth Circuit.
Another case involved a Panera Bread worker who doesn’t speak English misinterpreting a “no peanut” request to be a “add peanut butter” to a grilled cheese sandwich. That case is going forward.
A third case involved discrimination against a peanut-allergic child who wanted to be part of a Shakespeare group and they specifically barred him from joining. That case settled in the child’s favor.
There were more cases but I couldn’t take notes fast enough!
My take-aways: I want to follow the litigation more closely and find ways to contribute to this work. I did not know how skimpy and fragile our rights are as food allergy families under current law.
3:30pm Anaphylaxis 101: When to Epi
Julie Brown, MD, is a pediatric ER doc who has a fabulous YouTube channel that we should all subscribe to and promote – it is really that good. She gave a barnburner of a talk about anaphylaxis. The great news is that she posted a very similar talk on YouTube: Anaphylaxis For Healthcare Providers.
My take-aways: Epi first, epi fast, no exceptions. There are definitely times that we have not used epinephrine and we should have, based on Dr. Brown’s experience with and study of anaphylaxis. Also: past reactions do not predict future reactions. There is no such thing as a “mild” food allergy. Give the epi if a known allergen has been ingested even if last time the child “only got hives” or isn’t showing symptoms. You don’t know what’s going on inside the body that needs to be stopped.
4:30pm After Anaphylaxis
The session description captures it well:
As an adult with food allergies and editor of Allergic Living magazine, Gwen Smith has traveled the world and unfortunately experienced many severe anaphylactic reactions along the way. Gwen will reveal her tips for never letting food allergies get in the way of career, travel and an adventurous life, and share how she moves on after an unsettling reaction.
As the parent of a son with multiple food allergies and a history of anaphylaxis, Gina Clowes understands the life-changing effects of these on a child and family. Her work with thousands of allergy parents over the past ten years, has enabled her to support and guide parents to learn from mistakes and move on without being overwhelmed. Gina will share healthy ways to cope and strategies to balance safety with normalcy.
My take-aways: Live your life. Have adventures, but bring your epi. Don’t try to lock your kid in the basement for safekeeping. Set boundaries for your teen, such as “you can’t go out without your epi” but do let them go out with friends. Empower kids to make choices and advocate for themselves. For example, when going to a party at a friend’s house: Will you eat before the party? Or will you bring your own food? Or will you talk with the host in advance about what’s being served? Or do you want me to?
Sunday, Nov. 4
8:30am: Participating in a Clinical Trial: Emerging Therapies from Stanford University
Sayantani Sindher, MD, presented a Clinical Trials 101 overview and then dove into the findings of the latest published literature related to food allergy research.
One of the most striking slides was a figure from a Frontiers in Immunology article about food challenges. If you click through to look at it you’ll see it takes a minute to understand what’s going on, but the findings are powerful. There are strong relationships among allergens – for example, pistachio and cashew; pecan and walnut – but very little relationship for others, like wheat. I suggested that they create a more consumer-friendly version of it – an interactive could be very cool, I think, to help people understand relationships among allergens.
My take-aways: There is some really exciting science and discovery on the horizon for food allergy. It’s great to see the progress being made, even if it may not benefit my son. I do think the researchers could do a better job of including patients and families in the design of the clinical trials AND in the design of the communications of the results. They are rightly focused on publishing in medical journals, but they could create consumer-facing tools to help us make decisions about treatments based on the latest findings.
The Q&A was excellent. I attend scientific and health care-related conferences for my work and the questions from parents were as knowledgeable as I’ve seen from clinicians. A couple questions focused on a clinical trial involving the introduction of Xolair for 3 months ahead of the start of OIT. Kids on Xolair were able to ramp up to maintenance dose much more quickly and were then able to sustain that tolerance with as much success as kids who had not been on Xolair at the start.
After the Q&A I met a few parents who were pursuing OIT for their kids and recommended joining a Facebook group called OIT 101.
9:30am Ask the Allergist
This was a very useful session: A board-certified allergist – Paul Detjen, MD – answered any and all questions. I tried to take quick notes of each Q&A just to get the gist of it:
Q: The coroner in Natasha Ednan-Laperouse’s inquest questioned if the EpiPen delivered enough epinephrine and made some comments about the needle length. Should we be concerned?
A: No. Find and read the articles in Allergic Living about this case. Also, Dr. Detjen did a fellowship year in pathology, including participating in autopsies, and he doubted how the coroner could have anything of value to say about the needle based on his observations.
If anything, there is an epidemic of under-use and too-late use of epi. We should do everything we can to encourage people to use epi first and epi fast.
Q: My son’s allergist discouraged us from continuing with blood testing and said skin testing is better. Is there a movement away from blood tests because of false positives?
A: No, there is no movement away from blood tests. However, it’s true that both tests have flaws. Some clinicians rely more on skin tests and hive sizes but be careful – there is great variability in practice of test administration. How hard did the person push for the scratch test, for example? Recommends using both but prefers blood test.
Q: My child is extremely sensitive to milk – anaphylactic from cross-contamination, for example. Can we do OIT?
A: I can’t tell you myself, since as a leader of clinical trials, I am barred from saying what the thresholds are for qualifying for a certain trial, but if you look on social media you can see people sharing that they were not allowed into trials because of the severity of an allergy. In private practice, though, we do treat people with IGE of 100+ because they can benefit the most. We create a custom protocol for that one person.
Q: If my child ingests a known allergen, but has no symptoms, should I give epi?
A: Yes. Epi first, then call 911, then administer Benadryl. Those are the guidelines and what he recommends. You don’t go to the ER because you used epi (a common misperception). You go because the reaction could be biphasic. You just don’t know and you cannot ever predict.
Q: Can you tell us more about OIT?
A: 75 allergists in the U.S. do OIT. People are excluded when they can’t adhere to protocol. In his practice, they are very honest about the burden of OIT. If the family listens to our presentation and still comes back to ask, multiple times, then we are more likely to take them on. People are NOT excluded from our practice because of the severity of their allergies, their age, or the number of allergies they have.
Q: Why is milk so hard to tackle with OIT?
A: Milk is one of the toughest to do because of delayed inflammation of the stomach delays progress of the therapy. There’s also the complication of lactose intolerance. As he said, “Cow’s milk is from a different species and I don’t know why we drink it at all” (to much laughter).
Q: What is the “finish line” for OIT?
A: Safe eating. We don’t yet know the limits of tolerance. We say it’s a “vaccination status of unknown duration.”
Q: What about kissing?
A: There are good articles about this – share them with your teen. Bottom line: Tell your teens to live their lives, kiss people. If they have a reaction, fix it. Don’t be afraid of reactions. Always carry epi. Don’t hesitate to use it.
Q: What about manufacturing practices, especially sesame?
A: The FDA is collecting comments on whether to add sesame as a top allergen – please do comment. Cross-contamination is a serious issue. But as a clinician, I can’t tell you what your child’s tolerance level is since there’s no good standard for all the “made in a facility with…” and “may contain…” labels.
Q: Is there a risk of developing eosinophilic esophagitis (EoE) and/or eczema while participating in OIT?
A: Yes. But it can be managed by dropping the dose down and going more slowly.
Q: Can you predict a higher risk for EoE before starting OIT?
10:50am Protecting Teens with Food Allergies: Passing the Baton with Care and Confidence
Gina Clowes is hilarious. Her talk on how to parent a teen with food allergies had me laughing and scribbling notes, then laughing some more. A few take-aways:
– Ask your teen what he is worried about, then help him address it. Don’t project what you’re worried about onto him.
– Give choices, like when he was a toddler and you offered chicken fingers OR cheese quesadilla for lunch. He can either eat before he leaves for the night OR he has to tell you his plan for where he will eat.
– Have hard-line, non-negotiable requirements, like: You must always carry epi. With consequences: If you don’t, you don’t get the car this weekend.
– Build in layers of protection, a scaffolding. For example, he’s going away for the weekend with his friends to a new city. You can help by making a list of safe restaurants in the city, but let him choose where to go, what to order. Or you can ask him to tell you what his plan is for meals (and what is back-up plan is).
– Share articles from FARE and Allergic Living so it’s not your advice, but these other experts telling him the facts.
– Do scenario planning: If this happens, what do you do? Then what?
– Offer to be the bad cop. Blame it on Mom that you can’t eat that food, go to that party, etc.
– Notice what is working well, what your teen is handling on his own. Celebrate “maturity spurts” like growth spurts.
– Remember to thank the siblings who don’t have food allergies. They often show support in ways that you, the parents, can’t even see.
– If your teen appears to have social anxiety, work with him on it, including asking for help from a therapist.
If you would like to download the presentations, FARE provided this Dropbox: https://bit.ly/2D2cLFp
And that’s a wrap! Phew — kudos if you’ve reached this point. Please let me know if you have questions or want to discuss any of the above. Comments are open.
Cartoons courtesy of Food Allergy Fun.