My son was six days old when I realised we had a problem. I held my precious boy in my arms, my body wracked with sobs, as I tried over and over to feed him.
His back was arched and he pushed me away with his tiny hands as he cried in pain. Call it mother’s instinct, but I knew he wasn’t simply a fussy feeder’.
I looked at my husband through my sobs, heartbreak and hopelessness etched over his face.
Breastfeeding was proving a struggle and our baby was losing weight.
From around four weeks he refused to sleep through the day, some days staying awake for eight hours straight.
He was vomiting, had unusual nappies and suffered from reflux.
We tried natural treatment after treatment, and then thankfully, our understanding GP referred us on to a paediatrician who diagnosed bub with a dairy intolerance.
He was prescribed a script-only formula and I was advised to remove all dairy and soy from my diet.
Within three weeks we noticed changes, but still things did not seem right. And, once he began eating solids things only became worse.
His eyes were constantly red and puffy, his face blotchy and covered in rashes and he suffered from cradle cap. Looking at photos now, I am horrified that we didn’t have a clear understanding of what was happening within our little baby’s body.
He ended up in hospital twice with severe vomiting. His body limp and his colour so white that we knew it simply wasn’t a bug, or concussion as suggested.
A day sleep was rare and I was up with him at least six times a night.
We spent five nights in a private hospital clinic trying to overcome the sleep issues but little did we know that all of these problems were linked to one simple thing – his diet.
At 14 months of age, he was diagnosed with an intolerance to the natural food chemicals salicylates and amines, dairy and soy plus food protein-induced enterocolitis syndrome to chicken, wheat and dairy.
Also known as FPIES, it is a food allergy that affects the gastrointestinal tract bringing on severe vomiting, diarrhoea and dehydration. If not treated correctly, an attack can lead to a change in body temperature and blood pressure bringing on shock.
It is uncommon, occurring in one of 10,000 children, and thankfully around half of those suffering with the illness grow out of it by the age of four.
According to statistics from Queensland Allergy Services, around one in 20 people will develop a food allergy and one in 100 will suffer from a life-threatening allergy known as anaphylaxis.
Sunshine Coast doctor Alison Cunningham works out of Ocean Family Medicine specialising in allergies and intolerances.
She has trained under two of the country’s most respected paediatric immunologists and allergists, Professor Peter Smith and Dr Velencia Soutter.
“There are indications that our society is too clean so that infants do not acquire the healthy gut bacteria required for appropriate immune development"
Cunningham has worked with dozens of families towards managing both life-threatening and non-life-threatening cases.
Food allergies and intolerances are an increasing problem in our Western society and more research is needed to identify the triggers so that the trend can be reversed, she says.
“There is currently a great deal of research underway to identify reasons for the escalation in food allergies,’’ she says.
“There are indications that our society is too clean so that infants do not acquire the healthy gut bacteria required for appropriate immune development.
“Babies born by caesarean section have an increased risk of allergic disease as they are not exposed to the bacteria in the birth canal.
“Low vitamin D is also related to increase in allergies with higher rates of food allergies occurring in babies born in southern states of Australia in the winter months (caused by) reduced sun exposure for mother and baby.”
Food production, cooking methods and high levels of chemicals have also been named as factors.
“Allergy sufferers usually have the allergic genetic predisposition with other family members experiencing allergic conditions,’’ Cunningham adds.
“The condition may be triggered by conditions while in the uterus or in early infancy.”
Worryingly, there has been a 500 per cent increase in anaphylaxis admissions of children in the past 10 years.
This is an extremely steep increase and it has speared new research studies.
One such project is that of Melbourne Professor Katie Allen from the Murdoch Children’s Research Institute.
The Healthnuts study involved 5,300 children and is the world’s first comprehensive population-based study of food allergy with objective measurement of true allergy.
Her research revealed that at 12 months of age, almost 10 per cent of 12-month-olds had a serious reaction.
Identifying the difference between reactions is vital, Cunningham says.
In its most basic form, an allergy occurs when a person’s immune system reacts to substances in the environment that are harmless for most people. These reactions can vary in seriousness.
“Food allergies are an immune mediated reaction involving IgE antibodies, producing potentially sudden and severe reactions, some of which are life-threatening, such as anaphylaxis with respiratory failure and catastrophic drop in blood pressure,’’ Cunningham says.
“An anaphylactic reaction is treated with adrenaline injections which are available in devices such as the Epipen.
“Milder reactions may include hives or vomiting. Food allergies may be identified promptly with specific IgE (Immunoglobulin E) blood tests for the individual food or skin prick testing.”
Intolerances can be harder to diagnose and as a result are taken less seriously by the wider community.
Cunningham says intolerances are reactions that cause direct irritation of the gut, skin or central nervous system.
“The onset of reaction may be much slower, from hours up to days.
“There may also be an accumulative effect. Symptoms may be vague with rashes, headaches, abdominal pains and behavioural problems being among the wide range of reactions.
“Allergies and intolerances may be effectively managed by awareness and avoidance of risks, care while eating out and vigilance with ingredients.
“There are many challenges, including resistance from family members, food labelling problems and travelling.
“The lifestyle of the family of a child with food allergy is poor due to the need for constant vigilance.”
Sunshine Coast parents Kate and Clay Anderson live with this reality.
Their four-and-a-half year old son Zephyr has had a feeding tube from six weeks of age – a nasogastric tube until the age of 10 months and now a button inserted into his stomach.
He suffers from an extreme case of FPIES and suspected eosinophilic oesophagitis, more commonly known as EoE, and can only eat 19 different foods.
To supplement his diet he receives prescription formula through his button four times a day, and overnight.
Like with many cases, Kate first realised there was a problem while breastfeeding.
“He was feeding every two hours and not putting on any weight,’’ she says.
“At four months he had his first bit of rice cereal and ended up being violently ill but we brushed it off as a gastro bug.
At one point Zephyr spent a month in hospital getting “poked and prodded’’ while undergoing every test imaginable.
The tube was inserted to provide Zephyr with additional nutrients.
“He had a failure to thrive from six to seven weeks so it’s a catch up game,’’ Anderson says.
“Every time we trial a food it’s 50/50 on whether it’s going to be any good. Over a course of a week, we trial a quarter teaspoon, then half a teaspoon. He’s fine up to a tablespoon of food.’’
Sunshine Coast dietician Justine Urbahn works alongside families living with allergies and intolerances.
For many families she has been a lifesaver, guiding them through the little known elimination diet, which should only be conducted in conjunction with a medical professional.
She says managing strict diets can be difficult but it is the key to establishing good health for sufferers and offers this advice to any parent wondering if their child has a food reaction:
“Never remove a food from a child’s diet without challenging it. Removing foods can leave a child’s diet unbalanced and suitable replacement foods need to be added to the diet.”
Cunningham has overseen many elimination diets and says while it’s not ideal, it is a necessity for people like Zephyr to maintain good health.
“It is possible to have a low irritant yet nutritional diet.’’
For the Andersons, it has been a draining and emotional experience.
To assist their little boy in feeling more comfortable about his tube, Clay got a tattoo of his son’s feeding tube so they could be button buddies.
“In the beginning it was really stressful… we didn’t have an understanding of allergies and how bad they can be,’’ Kate says.
“We don’t know [how long Zephyr will have the feeding tube] but we are assuming it will be in there a while longer until he can have a substantial diet.
“It has been a massive life saver and we’d hate to see where we would be if the tube hadn’t gone in.’’
Anderson has since launched the Facebook group AU Tubies to bring families living with feeding tubes together forming a support network.
“Keep seeking for answers until you are happy. We did everything under the sun we possibly could for Zeph, trying to find as many people who could help as we could.”
• 1 in 3 people will develop allergies at some time during life
• 1 in 20 will develop a food allergy
• 1 in 100 will have a life-threatening allergy known as anaphylaxis
• 1 in 10,000 children are affected by FPIES
• Food intolerance symptoms include headaches, vomiting, abdominal pains, ongoing constipation, loose stools, rashes, behavioural problems, poor sleep and irritability
• Children commonly have intolerances to natural food chemicals called salicylates, amines and glutamates which are found in meat, vegetables and fruit
• Nine foods cause 90 per cent of food allergic reactions, including cow’s milk, egg, peanut, tree nuts, sesame, soy, fish, shellfish and wheat.
Sourced from Queensland Allergy Services and ASCIA.
If you think your child has a food allergy or intolerance, you may find these links useful:
• Queensland Allergy Services – Located on the Gold Coast, this is the practice of Professor Pete Smith and Dr Velencia Soutter. Visit qldallergy.com
• The Royal Prince Alfred Hospital Allergy Unit is one of the best in the country. Visit slhd.nsw.gov.au/rpa/allergy/
• Australasian Society of Clinical Immunology and Allergy – allergy.org.au