This is a bit of a rearview mirror look at what I feel were my family’s misses managing our son’s multiple food allergies when he was first diagnosed. The misses were a matter of timing and lack of treatment options in the late 1990’s and early 2000’s. Definitely not choices. Fast forward to the 2020’s and I see opportunity and great hope for young families managing a food allergy diagnosis today.
My hope is that our ‘misses’ will inspire you to explore food allergy treatment options, evaluate them, track their evolution if they’re not in-market yet, and figure out if they might work for your family situation, now or in the future.
Looking Through Our Rearview Mirror
We missed the window for the big trip to Disney World with our children when they were small, to make their world sparkle with Disney magic for a few days. We missed breakfasts with princesses, sailing with Pirates of the Caribbean, and singing with Frozen stars. That’s not to say we didn’t go places, do exciting things, explore the world as a family, but we didn’t make it to Disney World. And honestly? It does make me just a tad wistful. The moment for sharing that special Disney sparkle as seen through a small child’s eyes has come and gone and we can’t get it back.
Segue here. Headed onto the food allergy connection. Stay with me.
The point I’m making is that there’s a time and place for certain things in life. But when the ship has sailed. It’s sailed. Whether it’s making ‘Disney magic’ happen with and for your kids, or something more serious, more life-altering...
…Like considering and possibly undertaking some form of food allergy treatment to desensitize your child to their allergens.
The View Through the Front Windshield
You have this precious window of opportunity from the time your child is first diagnosed until they are maybe 15-17 years old, when they’re under your direct supervision and care, to explore treatment options for food allergen desensitization for their severest allergies. It’s not that treatments aren’t available for older teens or young adults, it’s just that older teens and young adults are less available for the treatment.
For the most part, at least through Middle School:
Your kids go where you or their caretaker go.
You set their schedules.
You manage their daily activities, getting them to-and-fro at the appointed hour.
A day or a morning of school missed here or there won’t crater their learning process.
The younger they are, the shorter their activities list, the more flex in daily life.
So coping with the rigors, the limitations, the demands of an immunotherapy treatment program is for the most part under your control.
In High School, admittedly, it becomes more complex:
Your kids learn to drive, and/or have friends who drive
Classwork intensity ramps up and so does homework
They manage their schedules, you check-in, keep tabs, offer help when needed
After school activities — part-time jobs, sports, theater, dance, debate, Model UN, friends — eat deeply into ‘free’ time.
They socialize independently (your ‘Social Director’ role has become obsolete.)
You have less control over their day-to-day and you need them to be ‘all-in’ to partner with you throughout a desensitization process. Net net, coping with the rigors, the limitations, the demands of a desensitization treatment program is exponentially harder.
Fast Forward to The Future
Now let me give you a glimpse into the future — I’m living it as the parent of a 20-something with five food allergies, two of them anaphylactic-severe. Granted, my 20-something is not your future 20-something and mine definitely lives with the courage of his own convictions.
When they leave the nest, and live independently from you, your ever evolving parenting role changes dramatically. Parenting becomes a matter of picking your moments and choosing your words to offer suggestions (not ‘nag’), to advise a course of action IF and WHEN they are amenable. Your life experience is often questioned, at times rejected.
As young adults, they make their own choices. They set their own path.
In my experience, it’s...
...Hard to get my son to consider seeing an allergist.
“I can’t go to my old allergist because I’m too old. Last time someone asked me who my kid was. Awkward.” — “I need a new allergist, but I’m too busy to find one.” — “The allergist you’re suggesting is too far away, too inconvenient to get to.” — “I don’t have time.”
...An exercise in parental frustration to get my son to see the life-changing potential peanut OIT could offer.
“Why would I do something that takes so much effort when it won’t CURE my peanut allergy? When I’d have to eat peanuts every day for the rest of my life? That’s insane.” — “I don’t have time.”
...A head banging exercise to get him to pursue a baked egg challenge, let alone egg OIT.
“It’s definitely interesting, but work is too busy.” — “It’s definitely interesting, but life is too busy.” — “I don’t have time.”
At a certain point, food allergy parenting can become a negotiation process, because after all, your young adult is in charge of their life. Heck, after age 18, thanks to HIPPA, you can’t even see their medical records unless they give you written permission.
We Have Great Hope
Today there are food allergy treatment options, mainstream choices, that weren’t even in existence 10 years ago, or at least, widely available. Explore them. Evaluate them. See if they’re appropriate for your child, a fit for your family’s lifestyle. Figure out how to access them.
Here are options that intrigue me that I wish my son would be open to evaluating and considering.
Oral Immunotherapy (OIT)
Latitude Food Allergy Care with locations in the Bay Area in California and New York City: The seeds of Latitude Food Allergy Care’s founding were sown in 2009 when co-founder Kimberly Yates crossed paths with Dr. Kari Nadeau at the Sean N. Parker Center for Allergy & Asthma Research at Stanford University. Yates was seeking novel solutions for her daughter’s food allergies. Latitude Food Allergy Care was established in 2018 and offers multi-allergen OIT.
Palforzia® from AimmuneTherapeutics is the first OIT biologic (and so far, ONLY) approved by the FDA (2020) for treating peanut allergy in patients ages 4 to 17. It is OIT dosing made consistent, simplified for immunology practices and patients.
Tolerance Induction Program (TIP)
Southern California Food Allergy Institute based in Long Beach, California: Founded in 2015, the SoCal Food Allergy Institute offers the Tolerance Induction Program (TIP), a proprietary clinical therapeutics model, based on data science and machine learning, for treating patients with severe food allergies. TIP has been under development since 2007 by Dr. Inderpal Randhawa and the program reports 8,000 in remission. While the treatment approach has not been extensively peer reviewed, a recent peer-reviewed study published by Dr. Randhawa is a precursor to pending FDA submission for approval of TIP as a medical treatment model.
There are also promising treatment options at different stages in the development pipeline. This also gives me great hope for the future. For example:
Epicutaneous Immunotherapy (EPIT)
DBV Technologies has been relentlessly pursuing FDA approval for its epicutaneous immunotherapy (EPIT) Viaskin patch that delivers allergen doses via a patch applied to a patient’s skin. Many clinical trials into the development effort, and despite numerous setbacks in the FDA approval process, the patch appears to be making headway towards FDA approval for treating patients ages 1 to 3.
Moonlight Therapeutics Inc., currently working on an intracutaneous treatment for food allergy for children and adults, just received an important clinical trial grant from the National Institute of Allergy and Infectious Diseases (NIAID.) Their concept utilizes a small, minimally invasive skin stamp (microneedles), designed to break through the top-most layers of the skin barrier and deliver allergens (specifically peanut at this time) to the skin’s immune cells to desensitize them to their allergens. This treatment probably has a long way to go before FDA approval, but…there is hope.
There are multiple lines of scientific inquiry into the gut microbiome and the impact of its composition on the immune system. Teams of scientists from multiple institutions, using mouse models, discovered that introducing bacteria from the class Clostridia into the gut microbiome appears to prevent the development of food allergy. Check out the research, here and here. Two start-ups are working to develop novel microbiome-modulating interventions for the prevention and treatment of food allergy based on this research — Clostrabio and Consortia TX.
Clostrabio was co-founded in 2016 by Cathryn Nagler Ph.D and Jeffrey A. Hubbell Ph.D (a biomolecular engineer and entrepreneur) both from the University of Chicago.
ConsortiaTX Inc. was co-founded in 2017 by Lynn Bry (M.D., Ph.D.), Georg Gerber (M.D., Ph.D.) and Talal Chatila (M.D., M.Sc.) and is based on research conducted at Boston Children’s Hospital and Brigham and Women’s Hospital, both affiliated with Harvard Medical School.
While a commercial solution may be long in coming, the novel solutions these ventures are creating are ones to keep tabs on.
Oral Mucosal Immunotherapy (OMIT)
Intrommune Therapeutics has created a specially formulated toothpaste containing peanut allergy proteins. The Oral mucosal immunotherapy (OMIT) will deliver allergenic proteins to areas in the oral cavity, potentially driving the immune system toward peanut allergen tolerance without ingesting it directly. Intrommune Therapeutics just announced completion of their last Phase I clinical trial patient visit and is planning a Phase II of their pediatric study to continue development of this new product. Keep an eye on this one.
Sublingual Immunotherapy (SLIT)
A four-year phase 2 clinical trial demonstrated that a peanut allergy treatment called sublingual immunotherapy ( SLIT), is effective and long lasting. The therapy involves placing a tiny amount of peanut protein under the tongue as opposed to FDA-approved Palforzia® for peanut OIT, which requires patients to eat medical grade peanut flour each day in gradually increasing amounts. While SLIT (similar to OIT and EPIT) is not a cure, it seems to offer a balance between protection for allergic reactions, and ease of use and safety. This is also one to track.
“Always focus on the front windshield
and not the rearview mirror.”
― Colin Powell, Statesman, Diplomat, and US Army Officer
You have this precious window of opportunity from the time your child is diagnosed until they are about 17 to fully drive the treatment exploration and decision process. And, if they happen to be a bit on the older side, to convince them that treatment could protect them from reacting to accidental exposures, plus open up a world of possibility like eating foods that ‘May contain’ or eating at restaurants and flying without fearing a reaction.
Given a do-over, with 2023 knowledge and treatment availability, I would not let that window close for my loved one. I’d definitely be proactive and try to seize the ‘Disney magic’ before he left home for college.
The clock is ticking. Will you let the window close without at least taking a look-see?
Disclosures: The author of this article and Allergy Force LLC do not have any relationship, financial or otherwise, with any of the companies mentioned in this article. The author is not a medically trained professional and the content in this article is not medical advice. For medical advice related to food allergy immunotherapies please consult with your physician.
About the Author: Gayle Rigione is CEO of Allergy Force, the food allergy app. She’s also an allergy mom. She’s lived the heart stopping moments when her son ate the wrong thing, second guessed reactions and raced to the ER. Her professional and personal experiences fuel her passion for creating tech tools and educational resources for people with food allergies. Whatever you do, do it with a full heart. Audentes Fortuna Iuvat
Images: The Rigione Family and Bianca Van Dijk from Pixabay