Within hours of giving birth to her third child, Stephanie Lambert knew that something was wrong with her little boy.
"At about 10pm every night in hospital, Rhys would be in intense pain and was screaming really loudly," she tells Essential Baby.
"The midwives kept saying that he had wind, and that an allergy wouldn't present itself until he was a few months old. But I knew something wasn't right."
As Rhys was Stephanie's third child, the midwives gave her space, assuming that she had everything under control. But one night they had to come and take Stephanie's newborn away because his screams were keeping everyone awake.
"Rhys would eventually do a big fart or a runny poo and then he would be fine," she says.
The 39-year-old Melbourne mum's two older sons have severe allergies, so she fed her third baby the same way she fed her other boys, by alternating breastmilk and a hypo-allergenic formula. One day, Stephanie gave four-month-old Rhys 40 millitres of formula.
"He was very irritable and I thought maybe I was annoying him. I propped him up in bed and left him to have a shower. I went to the toilet and came back and saw that he was covered in hives."
As Rhys had been playing outside, Stephanie thought he had been stung by a bee. She phoned the doctor and watched as the hives began to blend into one and his skin turned an inflamed red. Something that resembled shingles covered his back and his entire body swelled up.
Rhys then went limp and became unresponsive. He was suffering an anaphylactic reaction to the tiny quantities of dairy in the formula.
Stephanie rushed him to the doctor, who was unable to administer an EpiPen because Rhys was so young. A staff member ran to the pharmacy next door and got a liquid steroid called PredMix.
To Stephanie's great relief, after two doses of PredMix, Rhys regained consciousness and his airways began re-opening. He was taken to hospital for monitoring.
Stephanie described it as the most terrifying experience of her life.
"I'm a swimming teacher and I've always reacted well in other situations, but when it was my child, I just went numb. Afterwards, I felt really guilty. As my two older boys have allergies, I felt that I should have I known what was wrong with Rhys."
Stephanie's two older sons have allergies, eczema and asthma, but they do not have the life-threatening reaction of anaphylaxis, which affects the ability to breathe or the functioning of circulation. Rhys was diagnosed as being anaphylactic to dairy, eggs, nuts and sesame.
A study by Murdoch Children's Research Institute in 2011 found that food allergies affects 10 per cent of Australian children under the age of one, and up to 6 per cent of school-aged children at school. Only a small proportion of children with a food allergy have anaphylaxis, and anaphylaxis to food is most common in children aged under four.
'Everything got worse'
A couple of months after the terrifying episode with Rhys, Stephanie was diagnosed with postnatal depression.
"That first anaphylactic reaction was sort of a starting point – it seemed to trigger more reactions and everything just got worse," Stephanie says. "It was so overwhelming and I felt like I was failing."
A doctor told Stephanie to stop breastfeeding and Rhys started on a soy formula that cost around $35 a tin and was difficult to find. He was intolerant to it, so it caused stomach pains – though she was told it wasn't a serious allergic reaction.
Rhys is now seven and Stephanie says she parents him differently from her other two boys.
"I watch him like a hawk. Sending him to school was so scary. He can't go on playdates because I don't know what they've got at their house. It's quite stressful and you feel bad for being the 'annoying mum.'"
Nonetheless, Stephanie's vigilance has paid off, as Rhys has never had another anaphylactic reaction. She says that over the years she's been touched by how considerate other parents have been of Rhys' allergies. Once an entire friends' birthday party food was vegan and nut free – including the birthday cake. However, not everyone has been so kind.
"Once we went to a kinder party and a parent brought egg sandwiches. When I said that my son couldn't have them, a dad turned to me and said that it was just mumbo-jumbo, and that I was pushing my 'vegan living' onto my child. I've also had teachers tell me that my child's allergies aren't that severe and that these days you can just get kids desensitised. I used to get really upset about it, but I know now that it's ignorance."
Hope is on the horizon
A year ago, Rhys was accepted into a study led by Professor Mimi Tang at Murdoch Children's Research Institute in Melbourne. It's the first study in the world to use a probiotic together with oral immunotherapy in treating milk and egg allergies in children over the age of five. Oral immunotherapy involves giving Rhys a very small quantity of dairy, with the amount slowly increased over two years.
"We're trying to teach the immune system that the allergen is not a threat and to switch off the production of antibodies against it," says Professor Tang.
The reason why the study doesn't involve younger children is because many children will outgrow egg and milk allergies. Researchers therefore wish to avoid unnecessarily putting children through the program.
Studies have shown that when oral immunotherapy is used on its own, it often causes troublesome gut reaction reactions such as stomach pains, vomiting and diarrhoea, and even inflammation that can lead to scarring of the oesophagus.
"We hypothesise that the addition of the probiotic could make the oral immunotherapy more tolerable," says Professor Tang.
In 2015, Professor Tang published the results of a study that combined a probiotic and peanut protein. The nasty abdominal symptoms were significantly less severe. Furthermore, 82 per cent of children with a peanut allergy who underwent the therapy were able to tolerate peanuts, compared to four per cent in the placebo group. It is possible, though unconfirmed, that the probiotic could also lessen the severity of the underlying allergic reaction itself.
Treatment still some years away
In the past, the approach was to completely avoid the allergen – which meant that there was no treatment for anaphylaxis.
"We know that avoiding the allergen is really difficult, and that children with food allergies will typically have an accidental exposure at least every one or two years," says Professor Tang. "Families who face the burden of having to avoid the allergen every single day experience a lot of anxiety. There is the fear of knowing that the reaction could be-life threatening and that kind of unknown, together with the unrelenting vigilance required to avoid allergens, reduces quality of life."
Results from the current study on dairy and eggs will be available in 2021. However, it may be some years before Professor Tang's treatment could become widely available, because further studies will be needed to confirm the results. Over the course of the next decade, Professor Tang will start looking at other food allergies.
"We were very lucky to be picked up on the study. Rhys has been doing so well that we are now in maintenance," says Stephanie, meaning that Rhys appears to be developing a tolerance to dairy.
Rhys recently accidentally ended up with his brother's lunchbox and it contained pasta with shaved cheese. In the past, this would have been a life-threatening mistake.
"I didn't find out until that night that Rhys had the wrong lunchbox," says Stephanie. "But he'd had no reaction to the cheese – not even any vomiting or diarrhoea. We're not all the way through the study but I've already noticed a massive change in him. It's been amazing."