The Diagnosis:
As an infant, my daughter Mia struggled with sensitive skin and eczema. (Eczema may be the first sign of an overactive immune system.) At 5 months old she was diagnosed with dairy and egg allergies through skin prick testing after repeatedly developing hives at daycare. Around 8 months old, she received a “reactive airway disease” diagnosis, later formally diagnosed to be asthma after several ER trips and a hospitalization for labored breathing.
Mia's diagnosis of food allergies was initially confusing to me, as she was exclusively breastfed and had not yet started eating solids. Although she was only given breastmilk, she frequently experienced small hives and occasional widespread hives and welts all over her little body.
The fear and anxiety I developed from the near daily phone calls from daycare with details of Mia’s reactions were debilitating, impacting my mental health and my job!
One day, I received a call from daycare that Mia was having another, more concerning reaction. When I arrived, Mia had hives head to toe. I asked the caregiver to bring me her epinephrine - which they misplaced and it took them several minutes to find it. Once the epinephrine was brought to me, I stood over her for several minutes, frozen in fear, unable to inject the medicine. I brought her to pediatric urgent care, she was given Benadryl, and symptoms improved. Cue the guilt!
Little did I know at the time that this would be a moment that would later bond me to my future patients struggling to manage their own mental health over their child’s allergy diagnosis. While at the time I felt incredibly alone and as if I were failing as a parent, unable to protect her due to my own stress, I now know how extraordinarily common it is for parents to experience fear and anxiety over having to inject your child to help (or even save) them.
We followed up with an allergist, where Mia underwent skin prick testing (SPT) for milk and eggs. Both returned with positive results. After receiving more frequent calls from daycare, my husband and I decided to withdraw her from daycare and take on the responsibility of caring for her ourselves. I left my job and devoted the next several years to her safety.
The Next Few Years
The next few years included countless ER visits (between her asthma and allergic reactions), two episodes of anaphylaxis, and my girl being diagnosed with alopecia areata (likely stress-induced). We navigated the challenges of traveling locally and abroad, frustrating conversations with friends and family about Mia's dietary restrictions, and painful isolation surrounding social events.
Her earliest memories will always include her medical bag, which goes with her everywhere (and still does!). She has been on asthma maintenance medication since she was a year old, and has learned to live fully, despite her allergies and asthma.
Xolair, Who?
In September 2019, we visited Mia's allergist where we were first introduced to Xolair (Omalizumab), a "biologic" injection to control asthma, among other conditions. A biologic is a medication made from living cells that targets specific areas of the immune system. (The photo on the left is from that day!)
Mia had just turned 5 years old, and Xolair was approved for children 6+ with uncontrolled asthma. Aside from the (would be) high cost, we were nervous about giving her an injection.
Xolair targets IgE in the body, which is involved in allergic reactions and asthma. By stopping IgE from working, histamine is reduced—a chemical that causes symptoms like swelling, hives, and itching. This medication also reduces inflammation in the airways, making it easier to manage asthma.
Meeting Michael
Fast forward to September of 2023. Mia’s allergist brought up Xolair again, not only for her (still) uncontrolled asthma, but also knowing that the medication was in the process of receiving FDA approval for food allergy treatment.
I was quick to dismiss the medication until her allergist asked if we wanted to meet Michael, a 10 year old who was in the room next door and receiving Xolair for asthma and food allergy oral challenges. [Names are changed for privacy]. This peaked Mia's interest, as both children had similar allergies and overall sensitivity levels, and Michael and his Dad were willing to share their story with us. This. Changed. Everything.
This meeting facilitated joint decision-making, with Mia in the driver's seat. She was inspired by Michael's story (as was I) and she decided that wanted to give Xolair a try.
Starting Xolair & The First Food Challenge
Mia began receiving Xolair to help control her asthma in November 2023. After receiving the injections in the physician’s office three times–to ensure she would not react to the medication–I receiving training and approval to give her the shots at home.
Challenge #1 - Baked Egg
After six months on Xolair, we all felt ready for Mia's first baked egg challenge. Research was on our side: baked egg and baked milk are tolerated by approximately 70% of children with these allergies (not on Xolair). We felt this was an important step in evaluating Mia’s progress and potential desensitization.
The challenge? Consuming 6 grams of baked egg in a muffin in her allergist's office, using a carefully controlled recipe designed specifically for the test. And, she passed!! (Although, she was NOT a fan of the "eggy" taste.)
Challenge #2 - Baked Dairy
We continued to keep the baked egg in her diet after passing the challenge. For the next, we followed a similar recipe as above, however, replacing the egg with banana and using 2% cow's milk. She passed again!!
Challenge #3 - Scrambled Egg Passed! This challenge gave us more pause, so we followed the OIT (oral immunotherapy) principle and gave her 6 grams of scrambled egg - equivalent to about 1/11 of one whole egg. (One whole egg = 50 grams). We stopped there and continued to very gradually increase the dose at home until she reached the full dose of 50 grams.
Challenge #4 - "Whole" Milk
This is the biggie. Her anaphylaxis history was all related to cow's milk and this brought us some concern, but we felt ready. Mia safely consumed a (strawberry flavored) Noosa yogurt - 5 grams of milk protein.
Quality of Life & The Future
For Mia, starting Xolair has been life-changing. She isn’t nervous or afraid of what lies ahead; for her, she is free. At 9 years old, she has had so many firsts:
her first slice of pizza
attending her first birthday party without having to bring her own Tupperware of food
her first sleepover, where we all slept more soundly, free of fear
her first dining experience at a restaurant, without worrying about her having an allergic reaction
It is heartwarming to be able to watch her enjoy “normal” things like those around her. She doesn’t feel isolated and sad about the things she has to miss out on anymore, and she feels more confident out in the world.. And as for me, I no longer live in fear.
We are grateful for science, and we are patient. Yes, the million dollar question is: when will she get off the medicine? We don't have that answer quite yet. Our hope for Mia is that she can successfully get off this medication and maintain her tolerance to her allergens. I am finding comfort in the uncertainty, knowing she is safe and happy.
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Note: I am not affiliated with Genentech and/or Novartis, maker of Xolair.
References
Leung DYM, Bieber T. Atopic dermatitis. Lancet. 2003;361(9352):151-160. doi:10.1016/S0140-6736(03)12193-9.
Genentech, Inc. Xolair (Omalizumab) Prescribing Information. Genentech; 2023. Accessed November 14, 2024. https://www.xolairhcp.com/allergic-asthma/dosing-and-administration/dosing.html
Busse W, Buhl R, Fernandez Vidaurre C, et al. Omalizumab for the treatment of severe allergic asthma: a systematic review of real-world effectiveness studies. J Allergy Clin Immunol Pract. 2015;3(2):137-151.e3. doi:10.1016/j.jaip.2014.09.005
Leonard SA, Caubet JC, Kim JS, Sampson HA, Nowak-Wegrzyn A. Baked milk and egg diets for milk and egg allergy management: a survey of pediatric allergists. J Allergy Clin Immunol Pract. 2015;3(1):29-34.e1. doi:10.1016/j.jaip.2014.06.007.
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