Melissa's Allergy Story- My Desensitisation Journey with my Son's Food Allergies
By Melissa Toman, March 2024
Just when I felt I had this whole food allergy thing managed as a parent, along came food challenges and the desensitisation process, and I thought I would share some of our journey, the successes, failures, the unexpected challenges and things I’ve learnt along the way.
Firstly a little background, my son was diagnosed with multiple severe food allergies at just over 6 months old, introducing solid foods was not a fun time for us! I think we should have had a frequent flyers card at the emergency room. And by the time he was 12 months old he could tick off 7 items from the list of top 10 most common food allergens in Australia.
From that first reaction, we’ve been through, like many others, the countless appointments, holding his little hands while he was being poked and prodded, spending hours reading product ingredient panels while standing in supermarket aisles - probably looking ridiculous - and shedding the occasional tear at how small our food world had just become.
Slowly but surely, and after lots of recipe trial and error - including having to replace a muffin tin after probably my most comically epic recipe fail of all times - I have developed a good stockpile of recipes that are safe for our family and make it feel like nobody is missing out on any of life’s delicious treats. My son had learnt how to deal with his allergies, ask questions, read labels and was very good at advocating for himself (just ask his teachers), and we had settled into a nice little routine.
It was just then, sitting in the immunologist's office, and they announced some of the best and most terrifying news - kiddo’s results have finally shown some improvement. He was 8 when we had our first experience of a food challenge, and a desensitisation ladder, and in the 7 years since we’ve had 3 more, and are standing at 3 wins and a loss (to put it in sporting terms).
The way challenges are undertaken (from my experiences) depends on many things, IgE and skin prick results, previous reactions, food, the hospital/specialist you attend and often evolve with time as the experts learn more. The most important thing is to never undertake exposure to an allergen unless under the supervision or guidance of your immunologist.
So, in general terms, what can you expect? (From my experience)
For our in-hospital challenges, we were provided with a recipe to follow or a product to purchase that contained a specific quantity of the allergen to be challenged. After some general health checks the food is then introduced. Starting with the smallest quantity (sometimes even just rubbing the food on the inside of the lower lip) and then an immunology nurse will check for changes at specified intervals before administering the next, often slightly larger, piece. Then it's rinse and repeat several times until the end of the challenge is reached. There is then often a period of waiting time at the end to ensure there is no delayed reaction. These challenges can often last half a day, so I highly recommend bringing a book and remember your phone charger. Honestly, I usually bring my knitting and let my son pick the pattern, it calms me (essential) and no matter his age he has always been curious to see the progression, which helps distracts him from the process, and as a bonus we are now all well kitted out in beanies, scarves and blankets.
If no reaction occurs, you head home with instructions to monitor for delayed reactions and instructions on how to continue exposure. This may be as simple as providing the food a set amount of times per week, or a ladder exposure which may increase quantity, cooking or baking times or styles over a period of time. The hope being that the lack of reaction continues and eventually we can put a big red line through the allergen, done and dusted.
Some things I’ve learnt along the way.
As tempting as it is, don’t make your child’s favourite foods straight off the bat. This is something I learnt the hard way. Vivid green vomit and an invoice for car detailing was the result of trying to make the hospitals cupcake recipe more appealing, and to this day my son still has an aversion to foods not naturally green!
Arriving home, ladder in hand and keen to get started, it can come as a bit of a rude shock when your child is not as thrilled with the idea as you are. My son could smell egg in a cake from a mile away, and often flat out refused to participate at first. “Ladder food” day became very stressful. To be fair we did take some extended breaks away from conquering the ladder just to relieve the pressure. But after a lot of experimentation (who knew it would take as long to relearn how to bake with egg as it did to use substitutes), we slowly made progress, and I found recipes with strong complimentary flavours were most successful. As a parent who can eat anything, I didn’t place enough weight on the fact this food is a flavour he had never really had before and he might not actually like it - peanuts I’m looking directly at you here - so on top of the fear of eating a food you have drilled into them not to go near, it is really no surprise to meet more than a little resistance (imagine your most disliked food, then told to eat it multiple times a week for months on end).
Some logistics: We live in a regional area, with the only major children’s hospital over a 4-hour drive away and are advised that due to the trip home being through very sparsely populated areas, to not travel back home the same day as a challenge due to the risk of a delayed reaction. This means multi-day stays in the city each challenge. We find bringing our own frozen meals from home a quick fuss-free option when you arrive back at your accommodation from what can often be a physically and emotionally exhausting day. Another point with travel is see if you are eligible for your states Patient assisted Travel Scheme (PATS), this can help with fuel and accomodation costs, be aware this often need to be lodged in advance and sometimes have conditions attached, so good to get the ball rolling early there… and check if your hospital has parking fee reimbursement for country patients, we found it is not widely advertised and you often have to seek it out.
This is probably the hardest lesson I’ve learnt, if anaphylaxis does occur during the challenge, rest assured the medical team will swiftly swing into action - but as a parent, right at that particular moment, you are the least important person in the room. As distressing as that sounds, and no beating around the bush, it is… you being sidelined so that they can focus solely on your child and doing is what is necessary at that moment and is not done with any malice or disrespect. As soon as things stabilise you will once again be the number one person required for handholding, cuddles and love.
Probably our most unexpected hurdle was my son suffering from, what he felt, was a loss of identity. Allergies become such a part of their daily lives, its natural that they begin to feel it is an important part of who they are. The day my son told me in response to my excitement of moving onto the next rung on a ladder that he felt he was losing part of himself that made him special broke my heart. From that day on we approached the topic of desensitisation with much more sensitivity, I also think a combination of getting older and having more understanding of the process, and his next challenge involving the eating of marshmallows - which he found much more enjoyable - helped greatly. In fact he has jumped into his newest ladder challenge with gusto, finding recipes that meet requirements online, helping me make them and then consuming with glee … and gusto, although it should be noted he is a teenage boy now, and those who know, know the damage they can inflict on a fridge or pantry.
The desensitisation journey can be overwhelming, when we began we had no idea how it all worked or how much effort was needed after the hospital challenge day. I’m not sure if it's because immunologists assumed we knew or we didn’t ask the right questions. Naively, I thought after the challenge day, that was it, normal programming resumed… I didn’t understand the time, effort it took from everyone to really “overcome” the allergy. If you are coming up to you or your child’s first challenge, I hope this helps understand some of what may lie ahead.
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Thank you Melissa for sharing your Allergy Story with the community🙏
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