Why one Merewether family moved to America to tackle their son's allergies with OIT - oral immunotherapy

Sitting next to his future classmates at his orientation for kindergarten and without any of his allergens – tree nuts, egg or cow’s milk – in sight, he had an anaphylactic reaction, was given adrenaline and rushed to hospital.

He would go on to have another three anaphylactic reactions within three months.

Four hours after the third reaction and about to be discharged from hospital, his eyes rolled back in his head and he started vomiting.

“It was very scary,” said his mother, Liesel. 

“I thought he was going to die. The doctor said he was the most allergic child he had ever seen.”

Fast forward two years and after taking an unprecedented risk, the Merewether family is reaping the ultimate reward: Isaac appears to be on his way to living an allergy free life.

His parents, Liesel and Steven, decided to take Isaac last July to be seen by Dr Douglas Jones at the Rocky Mountain Allergy (RMA) treatment centre at The Tanner Clinic in Utah to try a potential new treatment called oral immunotherapy (OIT).

After six months, Isaac is eating a cashew and drinking more than 20 millilitres of both egg white and cow’s milk every morning – and his doses will increase almost every week.

“It is a conscious mental shift to feed Isaac foods that would have previously made him sick,” Mrs Allen said.

“We had six years strictly avoiding food that we now have in our home and feed our son. 

“I used to fear nuts like a loaded gun, and now I am letting my child eat them. 

“When Isaac first [ate] a cashew he was hesitant to touch it. He asked ‘Are you sure I can touch it with my hands?’ He has to wash his hands afterwards, but it still feels surreal to watch.”

Isaac, now aged seven, was one year old when he received a diagnosis of eosinophilic esophagitis (EoE), a rare, chronic and allergic inflammatory disease of the oesophagus.  

While the cause of EoE isn’t known, it is believed to be typically caused by an immune response to specific foods.

Isaac was breastfed for six months and upon being introduced to solid food could eat fruit and vegetables, but would vomit whenever he had anything containing milk.

He didn’t gain any weight between six and 12 months old and received a diagnosis of “failing to thrive”.

His first severe allergic reaction was aged one, after Mrs Allen used the same tongs she had roasted cashews with to serve his food. His face started to swell and his eyes started to close.

Mrs Allen follows several food allergy pages on Facebook and stumbled last year on a post about a Canberra family moving to the USA to treat their son’s tree nuts allergy.

They had been inspired by a page called Oliver’s Choice. Mrs Allen contacted Oliver’s mum, Simone, and started researching OIT.

“Once I found out about OIT I couldn’t think of anything else. It was the first time I felt hopeful. Once I knew that there was treatment, it made living without treatment unbearable.”

The Tanner Clinic describes OIT as involving the introduction of minute doses of milk, egg, soy, peanut, tree nuts, sesame, or wheat solution form for about six months, the time varying according to individual differences.

The program progresses under supervision to small doses of the whole food.

“At the end of the program [and after the patient’s immune system has adapted to the allergen], most patients are able to consume the foods that once threatened their health with no allergic reaction,” the clinic website said.

OIT is not yet available in Australia.

The Australasian Society of Clinical Immunology and Allergy (ASCIA) has warned that OIT methods are not currently standardised or approved for routine treatment of food allergy and there were concerns about a high or unknown risk of potential harm.

“Currently there are no OIT methods approved by the Food and Drug Administration (FDA) to treat food allergy in the USA,” its website said.

“There are several clinical trials on OIT for food allergy underway in Australia and other countries.

“Until these trials are completed, with methods, safety and effectiveness determined, ASCIA recommends that OIT for food allergy should not be performed outside of clinical trials.

“The possible benefits from OIT are desensitisation and tolerance. Published trials have shown a limited ability for OIT to result in ongoing tolerance and permanent benefit. 

“Until OIT for food allergy is proven and standardised for routine use, and shown to be safe to undertake at home, avoidance of confirmed food allergens is essential for the management of food allergy.”

Mrs Allen said Australians deserved more treatment options than just avoidance – and they needed them now.

“Avoidance wasn't working for us,” she said.

“Isaac had been hospitalised six times with life threatening and anaphylactic reactions and he was only six years old. It was a stressful way to live.

“I was okay with trying OIT and it not working for us, but I couldn’t live with myself not trying.”

She said because of Isaac’s EoE, he was unlikely to be considered for an OIT clinical trial in his home country, or accepted as a patient.

The family withdrew Isaac and his sister, Bianca, 10, from their supportive school, Holy Family Primary at Merewether, and enrolled them in North East Public School of Distance Education, which sends work to Utah.

They applied for medical visas. 

Mrs Allen, Isaac and Bianca boarded their flight on July 14, wiping down their seats, arm rests and tray tables and placing a cot sheet over Isaac’s seat. 

Mr Allen and Isaac’s older brother Noah, 12, arrived on October 27.

Mrs Allen said Isaac is the only EoE patient from outside the United States receiving OIT treatment within its borders. 

Dr Jones is treating another 16 Australian families, who don’t have conditions like EoE but have similar allergies.

Isaac’s treatment began with “oral food challenges” to test his reactions.

He started by ingesting small amounts and increased the dose every 15 minutes.

He failed the cow’s milk challenge, but passed for pecan, walnut, hazelnut, almond, macadamia and brazil nut. “At first I was terrified,” Mrs Allen said.

“To even have nuts in the same room was scary for us. The first day [of OIT] all my doubts subsided. We trust Dr Jones – he has given us a life of hope and freedom that I never even dreamed of.”

Isaac sees Dr Jones each Wednesday to “up dose” his cashew, egg white and cow’s milk amount under supervision, before resting in the clinic waiting room.

An increased heart rate or temperature can increase the risk of anaphylaxis, so Isaac rests for two hours after daily doses of the same amount are repeated at home.

In the first week, he had two millilitres of a cashew solution, 6ml of a milk solution and 5ml of an egg solution. He now has a cashew and more than 20ml of both egg white and cow’s milk every morning.

When Isaac “graduates” from OIT – which will involve eating an egg and drinking a cup of milk – he will still be allergic and need to have a serving of his allergens every day to maintain his desensitisation.

“The biggest advantage OIT gives is hope for a life without fear,” Mrs Allen said.

“It is a social cure because it eliminates the social exclusion due to food allergens. It is an emotional cure because it eliminates the fear of food and the feelings of being left out or different.

“Isaac used to repeat ‘I wish I didn’t have allergies’ all the time. He would also ask about dying all the time. 

“He dreaded the part of a birthday party when everyone ate food, and he couldn’t eat with the other kids. 

“He [now] wants to go to a friend’s house after school without me present and eat an afternoon snack – a simple little thing that he has never been able to do. 

“Isaac is more confident. His attitude towards future events is more positive.”

That’s not to say it has been easy, or suits everyone.

“The children going through OIT go through a lot physically and mentally,” she said.

“They have to hate being allergic so much that they are willing to do anything to change their life.

“They have to commit to eating or drinking food that they fear and potentially may hate the taste of every morning.

“OIT also comes at a huge financial cost, plus many families have to separate for long periods of time for work and school commitments.”

Mrs Allen estimates the move will end up costing between $80,000 and $100,000.

The Allens are juggling the rent for their Utah apartment with their mortgage at home and have had to buy a car.

Mr Allen, Noah and Bianca will return home later this month but Mrs Allen and Isaac expect to stay in Utah until July.

Still, it remains “one of the greatest decisions of my life”.

“I took a leap of faith and I am so grateful that I did.

"I followed my instincts. It was very hard to go against the advice of specialists.

“[But] cross contamination from a cashew powder has previously resulted in needing to give Isaac an EpiPen and take him to hospital… and now he is eating a cashew every day.  It is a dream come true.”