Editor’s note: The following article is a case study highlighting the importance of the patient’s perspective in navigating food allergies and the importance of advocating for yourself in the face of scarce resources.
Case introduction
A 15-month-old boy with a history of multiple food allergies presented to the allergy clinic for a second opinion regarding food allergy management. At eight months of age, he had developed hives, eye itching, facial swelling and lethargy after having eaten a small amount of peanut. He was brought to hospital for anaphylaxis. An allergist found that the child had a peanut allergy and told the patient’s mother to avoid peanut and carry an EpiPen. The mother, though, had learned independently about a second option – oral immunotherapy (OIT) for foods – and sought a second opinion.
Mother’s perspective
After years of trying to have a child, my former husband and I were blessed through a surrogate with having our son, Noah, in 2019.
For the first almost year of my son’s life, many in my circle remarked how relaxed and laid back I was as a mom. However, upon Noah’s first exposure to peanut butter at eight months and his subsequent immediate allergic reaction, my easy-going nature substantially shifted, and I became very anxious, hypervigilant and quite fearful for him to try new foods.
It has only been the introduction of oral immunotherapy to combat his multiple food allergies that I feel there is hope that my son’s life will not be dominated by his various food allergies and my anxiety has lessened.
We were not initially offered OIT through Noah’s first allergist or even our family doctor. When we went to his first allergist, we were simply given EpiPens and told to avoid eggs, peanuts, hazelnuts, almonds and walnuts. Obviously, I strictly adhered to this and our home became an allergy-free zone. It became a place that I felt I could control the uncontrollable. Restaurants and social gatherings were anxiety-provoking places and events. In the first few months after discovering Noah had allergies, I alternated between feelings of helplessness, depression and rage.
What perhaps saved my sanity and I believe my son’s quality of life is the circle of moms with kids with allergies. It is a small but mighty circle. One mom who was a friend from another group I’m a part of told me about the relative success her son has had with OIT. I quickly contacted my doctors about OIT and was discouraged both by the first allergist and a family doctor because of Noah’s young age.
Surprisingly, I now know that it was precisely Noah’s young age that would make him an ideal candidate to try OIT. We were finally able to get in to see one of the two allergists in our major city who offers OIT.
Allergist’s perspective
Noah was referred to me for a second opinion regarding management of multiple food allergies. His mother had deliberately sought me out as a provider who might be able to offer oral immunotherapy.
When I first met him, it was clear that food allergy was having a significant negative impact on the family’s quality of life. Anxiety, social isolation and even bullying are common for those with food allergy and their families. Keeping a toddler away from multiple foods, some of which may be offered by friends and family members, requires constant vigilance and is often anxiety-provoking.
Our team thought Noah was an excellent candidate for oral immunotherapy based on his age. His mom was very motivated to pursue treatment, but experienced understandable worry surrounding food allergy in general and the potential need to manage side effects at home independently during treatment. Anxiety on the part of the patient or parent has been identified as a risk factor for early discontinuation of therapy.
Mother’s perspective
It takes a real commitment to do OIT, particularly when you have to up dose multiple allergens. Moreover, although Noah has never had a reaction to an up dose or dose, giving the allergens, especially in the beginning, was stress inducing. However, with experience and knowledge, it becomes easier.
Noah has been at a maintenance dose for more than a year for all of his allergens. This has been ideal given that Noah is now in daycare. What has made it tricky is all the cold and illness that come with daycares and determining whether he’s well enough for his dose.
I was the most relaxed about the incident knowing OIT was protecting him.
Given my cautious nature, I’ve often skipped doses for several days, especially when his cough stemming mostly from his asthma develops. When he’s missed doses, I have to reduce the dosage until we are at maintenance again; often, by the time we are at maintenance, he has another virus, so it has been a bit of a cycle.
Despite the time commitment and other logistics, what OIT has given us is some freedom from that anxiety. Our daycare has been extremely vigilant about keeping my son safe. However, one day a child brought Nutella to school, and it was spread all over the lunchroom. Among the director, the educators and myself, I was the most relaxed about the incident knowing OIT was protecting him.
That’s what OIT does; it helps my son live a more normal life. Now, if he comes in contact with a loose peanut fallen in a baseball stadium, he will be OK. Although he reacted to a trace amount of peanut butter on my finger at his first exposure, now he’s consuming over one peanut a day. He’s still only almost 4, and he doesn’t understand about his allergies. He just knows he eats his nuts every night to help him. My hope is that he will outgrow all of his allergies or at least some of them and will have greater freedom.
Allergist’s perspective
Our team was incredibly impressed by Noah’s mother’s willingness to work through her fears to ensure that her son had access to treatment. She engaged the services of a psychologist, allowing me to meet with them to review the OIT process and potential side effects. The mom communicated clearly with our clinic team and brought excellent questions to Noah’s visits. I feel strongly that the work she did to manage anxiety was instrumental to Noah’s success. Our experience with them has led to a direct change in how we practice. Our team now identifies anxiety and refers families for counseling services prior to starting OIT.
Medically, Noah has done extremely well with very few side effects (facial flushing only) during treatment. Standard safety precautions were followed for this patient for OIT, including pausing doses during acute illness, immediately after exercise, and during administration of NSAID medications.
His course has been complicated by a new diagnosis of asthma, after he entered daycare in a post-pandemic world. Poor asthma control can increase the risk of side effects with OIT, and he has had a closer than typical follow-up and uses a regular inhaled corticosteroid. He has been very consistent with his OIT doses, though we sometimes hold or reduce doses with viral illnesses.
It has been very rewarding to witness the positive impact of treatment for Noah’s family. Parent fears around inevitable accidental exposures are lessened, knowing that treatment offers protection. We’re looking forward to repeating his testing and doing food challenges for him in the next few months to see whether we can remove any of his food allergy labels.
Mother’s perspective
Food allergies impact not just the child, but the entire family and communities in which they reside. Moreover, food allergies impact not just the dietary life of a particular family but the social/emotional and psychological well-being of the children and their families as well. Fortunately, OIT gives families whose kids have life threatening allergies a chance at a relatively normal life. My hope is that more physicians refer their patients for the treatment.
