OUR OIT JOURNEY: HOW ORAL IMMUNOTHERAPY CHANGED CHARLIE'S LIFE WITH FOOD ALLERGIES

On 4 October 2017, our family boarded a plane to the USA filled with hope. Hope that a treatment called Oral Immunotherapy (OIT) could give our son, Charlie, who lived with multiple life-threatening food allergies, a safer and better quality of life.

We dreamed that one day, food would no longer rule our lives through fear.

Living with Multiple Food Allergies

Charlie has lived with severe food allergies since infancy. He’s experienced anaphylaxis multiple times before at daycare, during hospital food challenges, along with countless mild allergic reactions over the years from accidental exposure.

As his mum, it was terrifying to imagine his future when, at the time, no treatment options were available in Australia.

In 2017, ASCIA (the Australasian Society of Clinical Immunology and Allergy) recommended strict avoidance of confirmed allergens as the only management option. They were waiting for food allergy OIT to be proven safe, effective, and standardised before approval.

But for families like ours, with a child allergic to dairy, eggs, peanuts, cashews, pistachios, walnuts, pecans, and mustard seed, strict avoidance felt like a high-risk, low-reward strategy. One small mistake during everyday life, such as school or a birthday party, could have life-threatening consequences.

Taking a Leap of Faith: Starting OIT in the USA

With no options available in Australia, we made the life-changing decision to travel to the USA for OIT treatment on a medical visa.

We rented a small unit in Utah, and for the next 9 months I managed our new OIT life on the other side of the world with three young children, Charlie (5), Arnold (3), and Evelyn (18 months), while my husband remained in Australia for work and visited when he could.

It was an incredibly challenging time, but I’ll forever be grateful for the other Australian families who also made the journey to the USA for OIT. We built a small but strong support network that helped us through every high and low.

📸 Image: Charlie at the OIT clinic in Utah - A life-changing journey begins.

The escalation phase of OIT took nine months, during which Charlie completed OIT for milk, egg, peanut, walnut, pecan, cashew, and pistachio. Thankfully, he also outgrew his mustard seed allergy during this time. Unfortunately, after returning home to Australia, Charlie developed a new allergy to hazelnuts even though he had successfully passed a hazelnut food challenge in Utah. 

What OIT Looked Like for Charlie

We visited the Utah clinic weekly for up-dosing under the observation of Dr Douglas Jones and his team of nurses. After each visit, we continued daily dosing at home under a strict protocol.

At the beginning of Charlie's OIT journey, each dose was carefully prepared by a compounding pharmacy. As the treatment progressed and the dosing amounts became larger, we moved to buying his food allergens at the supermarket and measuring his doses at home. 

Some weeks the individual dose increased, others weeks it stayed the same, and sometimes the doses decreased, all tailored to Charlie’s progress and individual response.

Charlie graduated from OIT in June 2018 and entered the maintenance phase, which continues to this day. Charlie's daily maintenance dose has consisted of consuming 200ml of cow's milk, 45ml of liquid egg white, 8gm of peanuts, 8gm of cashews, and 5gm of walnuts. At first, his daily dosing took hours (he strongly disliked the taste of some allergens!), but as his body adjusted, it became a 15–20 minute routine.

Charlie occasionally experienced mild allergic reactions, particularly during illness, and he no longer reacts with hives when coming into contact with his allergens, which is something that once caused constant anxiety.

📸 Image: Beginning of Charlie's OIT journey with dosing syringes - Nine months of courage and commitment.

Life After OIT: A Whole New World

The difference OIT has made is truly life-changing.

Charlie can now enjoy experiences that once felt impossible, such as eating out, attending birthday parties, going to school events, or simply playing at a playground without fear. He no longer lives in fear of what others are eating around him, either.

Charlie still carries two EpiPens and Zyrtec everywhere and still needs to strictly avoid hazelnut as he has not completed OIT for this allergen yet.

Overall, his confidence, mental health, and independence have flourished since completing OIT.

That freedom alone has been worth every challenge. 

Food allergies are still a constant conversation in our everyday lives. However, food allergies no longer have full control over everyday life.

📸 Image: Charlie at a café and playground after OIT - Confidence and freedom after OIT.

Regular Allergen Testing and Recent Results

Charlie continues to attend video appointments with his American allergist every 1-2 years to review his skin prick tests (SPT) and blood tests. Charlie's dosing amount and frequency have reduced over the years, too. 

While his results have improved dramatically since beginning OIT, they have always continued to show allergic sensitivity, until now.

We recently received Charlie’s latest results, and for the first time, his USA allergist is confident that Charlie is in remission for his milk and egg allergies thanks to OIT.

This milestone feels monumental, a moment we once only dreamed of, given how many everyday foods contain milk and eggs combined with Charlie's previous sensitivity.

Charlie is still highly allergic to hazelnuts, with no OIT protection, as he developed this allergy in 2019 after we returned from OIT in the USA. We are currently considering starting either SLIT or OIT for Charlie's hazelnut allergy through Immunity Group Australia under the expertise of Dr Jones. Charlie has not reached remission for his other peanut and tree nut allergies after years of OIT treatment. 

📸 Image: Charlie's blood test results over 9 years.

The Reality of OIT: Not a Cure, But a Lifeline

OIT isn’t a cure, and Charlie still lives with food allergies. But it’s given him protection, reduced the risk of severe reactions, and most importantly, given him his life back.

Whenever Charlie feels frustrated about his OIT dosing, I remind him how far he’s come.
His answer is always the same:

“Mum, I don’t want to go back to living the way I was before OIT.”
Neither do I Charlie. Neither do I. 

📸 Image: Certificate for Charlie for completing OIT for another food allergy along with his siblings, Dr Douglas Jones and the amazing nurses.

Why I Hope OIT Becomes an Option in Australia

I’ve read too many heartbreaking stories of lives lost to accidental allergen exposure.
For those with multiple food allergies, strict avoidance isn’t a perfect solution, and it’s high-risk, full of anxiety, and leaves no room for error.

I hope ASCIA and Australian allergists can see, from experiences like ours, that under the care of an experienced OIT allergist, OIT is a safe and effective treatment option for families who want it.

Not every allergy family will choose it, and not every allergist will offer it. Still, Australian allergy families should be empowered with choice and information to decide what’s right for them.

📸 Image: Starting of our OIT journey in the USA because this life-changing treatment wasn't available in Australia in 2017. Yes, that was our BIG car in Utah!

📸 Image: A future where allergy families have options. Our Australian allergy family enjoyed churros (containing some of Charlie's food allergies) at Disneyland, LA, on our way back home to Melbourne, Australia, after completing OIT in Utah, USA.   

Follow Our OIT Story

If you’d like to see more from our OIT journey in the USA, you can view our story on Facebook: ➡️ Charlie’s Big OIT Adventure

There, we documented our time in Utah, the ups and downs of OIT, and the incredible community we met along the way.

Listen To A Podcast Interview About Our OIT Journey

If you would like to listen to a podcast interview with OIT allergy mum and founder of Charlie's Safe Treat Box, Sharon Gilbert, you can listen here:

A Message from Charlie’s Safe Treat Box

At Charlie’s Safe Treat Box, our mission has always been to make life with food allergies a little easier and a lot safer. We understand firsthand the daily challenges families face when navigating allergies, because we live it too.

That’s why every product we stock is made without any of the top 10 food allergens (including milk, egg, peanut, and tree nuts) and has no “may contain” statements.

We'd love the support of the Australian allergy community to continue to grow this business and increase the amount of safe snacks available in Australia.

💛 Explore our safe snack range
💛 Learn more about our allergen standards