Now that I’ve had some time to digest the aftermath of our first failed food challenge last month, I am able to pen down my afterthoughts.
Read about our lead up to this post here: A Failed egg muffin recipe and a proven one for baked egg challenges
The smallest Glimmer of Hope Dashed In Fifteen Minutes
In truth I knew that there was almost a certainty of a reaction. Even our allergist said so given his diagnosis of how allergic Corey is (and he has always given accurate predictions!). But I could not help but harbour a small glimmer of hope that perhaps, just perhaps, he might be able to tolerate enough for us to start him on a maintenance dose. So when he developed a small hive on his upper lip only after the first dose, it was a little hard to hide the disappointment.
The look on Corey’s downcast face when he asked “awwww I can’t eat anymore?” Was enough to make my eyes tear. Before the challenge I was worried he would not eat the muffin because food allergic children tend to be suspicious of new tastes. Here he was, enjoying that first taste of real baked egg and he was told no more.
Five minutes of grief
As we went about the rest of the day normally, I allowed myself small pockets of grief. These bouts of sadness and fear usually pop up whenever I catch myself worrying about Corey’s future. Will his condition put his life at risk? What happens if he has a reaction and I am not around?
With experience I’ve learnt to limit these negative emotions as they are simply not helpful. It doesn’t mean I deny the sadness. In fact, by acknowledging the sadness I am able to inoculate myself from long drawn periods of disappointment and worry over the unpredictability of Corey’s condition.
Many well meaning friends reached out After hearing about our failed challenge. Some also asked me how I do it, stay positive in spite of the odds stacked up against us with such severe allergic conditions. The following are my 6 tips that helps me stay on track.
Tips On How to Stay Positive for your allergic child
1. Look to your child for inspiration
People usually tell you to take comfort by looking at those less fortunate. But I found this counter productive. I find absolutely no joy in observing someone else’s worse off situation, it never made mine any better.
Rather, if you are feeling down about your child’s condition, you only need to look at your child’s smiles for inspiration. Recall how he giggles uncontrollably while making monkey faces with his brother. Or how focused he is when he’s playing with certain toys, and the triumphant look of joy when he proudly shows you the city he built that takes over the room. Yes, I find much more motivation from just watching my highly allergic child thrive despite his condition.
2. Stay in the present and learn to control what you can, now.
Push away thoughts of the future, file away thoughts of the past in journals or notes somewhere.
It’s a parent’s prerogative to plan and worry for their child’s future. The unknowns for an allergic child can be exceptionally overwhelming. I used to watch my son scratch incessantly and wonder if he would be able to wear shorts. He would wake up so groggy from sleepy antihistamines that I feared he would have to be home-schooled. Today, he is a happy 4 year old who wakes up on time for school and yes he wears school shorts and he doesn’t come home with legs scratched to a pulp. Concentrate on the things I could control and work on in the present.
As for sad moments that have already happened like this recent failed food challenge, I journal down my thoughts and also make notes in a systematic manner. Then I file those away to be used during our next doctor’s appointment. I have no doubt we are likely to see more (failed) food challenges in the future, so dwelling on this will not speed up my son’s ability to outgrow anything. For now, we have to continue avoiding his allergens to keep him safe and teach him how to advocate for himself.
3. Advocate for your child, in a firm but respectful manner
When I first started our journey 4 years ago, I was angry ALOT. Angry at myself for somehow not preventing his allergies. Angry at people who did not understand and said I was being a helicopter parent. Angry at people for being back-seat drivers telling me what I should do when they did not have the first clue about my son’s condition.
At some point, I said enough is enough. I am his mum and only I (and his main caregivers) know intimately exactly how to handle his health. Our allergist and I set the ground rules on how to keep my son safely away from his allergens. While others may accord well-meaning advice, I will respectfully listen but not necessarily follow.
People in general don’t know what they don’t experience themselves. So I can’t blame the restaurant staff for not being sure if a food item contains trace amounts of my son’s allergens. If I am in doubt, I just won’t feed it to him.
As for comparing notes with other allergy and eczema parents, my advice is to stay open minded but remember that each child’s situation is unique. So oftentimes any similarities might be purely coincidental. That’s why the prudent thing to do is to cross check your thoughts with your trusted doctor.
4. Teach your child to advocate for himself
This starts with me learning how to advocate for him properly. By constantly practising tip number 3, I am preparing for the eventuality that my son will have to advocate for himself.
Our children learn from mirroring our actions and responses. So if I’m constantly nervous or show signs of anxiety and doubts, my son picks up on it. I remember he was very nervous when I first brought up the subject of asking him to eat egg in the hospital for the challenge. I reassured him that its a fun outing and we are just going to try a little bit to see if he is outgrowing it. I told him he must be brave to try things that mummy says is ok. And only the things that mummy, or daddy, says is ok.
He definitely took the failed food challenge better than me. After the doctor said he couldn’t have the second portion of muffin, he said “awww I can’t eat anymore” and went back to playing with toys.
As he gets older, I know I will have to teach him to read labels and explain to others what his allergies are. And teach him to cook.
5. Learn to cook allergen-friendly foods
When my kids were born, I knew I wanted to learn some cooking and feed them nutritious foods. But never did I expect that I would need to learn to cook at the scale that I do today. I like to tell people my family follows a meat-eating vegan diet that is nut free. An absolutely mouthful to say so I just call it an allergen-friendly diet.
The safest way to ensure food allergic child doesn’t have mysterious reactions is to learn to cook. We hardly ate out even before Covid19 and now that we are spending even more time at home, we recreate whatever we feel like eating at home.
Start with the basics like overhauling your cooking oil, sauces and seasonings. You don’t necessarily have to choose organic but choose simple ingredients and simple preparations.
Get inspired by searching for recipes online and experiment! For young babies, it is the perfect time to set a foundation of good dietary habits. Think of your baby’s diet as a blank slate for which you can build in the pieces one nutritious ingredient at a time. There is no need for weaning baby’s to try processed foods which contain a lot of unhealthy preservatives. You can make simple cookies yourself. Get a bread maker, it will change your life.
Related: Weaning your allergic or eczema baby
6. Having a shift in mindset – play the long game
The disappointment from the failed food challenge was just another small reminder that I needed to stick to the above 5 tips to soldier on in our food allergy and eczema journey.
While I focus on the first 5 tips daily, I realised that to fully embrace the food allergies and eczema required a major shift in mindset. I am hopeful that Corey will get stronger and who knows, might even outgrow his allergies someday. Science may even catch up one day and more effective therapies come available for us. But for now, I can’t obsess over the outgrowing and cures because Corey (and I) need coping solutions now.
“But how do you not focus on the disappointment, worry and sadness and fear of never outgrowing or mysterious life threatening reactions happening?”
This is a question I get asked often and my answer is I decompress often by acknowledging my fears and disappointment. Then I let them go and move on. go for a walk alone or maybe have a good cry. Play the long game and learn how to control an unpredictable situation by following the above tips, and you might just find your mindset will change.
If our first failed food challenge was a precursor of more similar food challenges in future, I have no doubt Corey will ace future sessions with his positive attitude. If he isn’t giving up, why should I? I
All opinions and views expressed herein are the author’s own and not anyone else’s. Any quotes from medical healthcare professionals are written from the author’s perspective and should not be construed as medical advice. Every child and every symptom is different thus it is important to seek advice from a professional allergist or dermatologist for your unique situation. All images and pictures on this website are copyright of the owner of this website and cannot be used or downloaded without permission.
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