Some children can be fussy eaters, but for Shannon Doyle’s family, limiting her children’s food choices is a necessity.
The mum-of-three’s youngest – aged five and two-and-a-half – have both been diagnosed with Mast Cell Activation Syndrome (MCAS) – a condition that occurs when the mast cells in your body release too much of a substance that causes-like symptoms.
The two kids are severely allergic to almost all foods, causing them to break out in hives, with chronic pain and excessive sweating – and their rare illnesses have ‘stumped’ doctors.
Her son, Nathaniel, can only eat nine foods without having potentially life-threatening anaphylaxis symptoms.
While her little girl, Thea, is forced to live off a particular baby formula that doesn’t upset her stomach, as she claims she is allergic to water along with all types of food.
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Shannon’s youngest Thea, who has severe allergies (
Shannon Doyle)
Mum Shannon alongside Thea (
Shannon Doyle)
The 37-year-old, from County Kerry, Ireland, has spent years going back and forth with expert immunologists to help her youngsters – but is left terrified for their future.
Shannon’s eldest daughter, Madison, 12, was a little difficult when it came to feeding, but it was nothing compared to her son.
The family – who live in Victoria, Australia, after Shannon moved out there in 2006 – discovered there was something wrong with Nathaniel as a newborn.
He was vomiting often, had diarrhoea with blood in his stool, came out in unexplained rashes, and was constantly screaming after feeding.
At 11 days old, he was admitted to hospital overnight for monitoring.
Shannon, who was breastfeeding Nathaniel, says she was advised to cut dairy from her diet.
She felt helpless and lived in a constant state of stress and worry over what was happening to him.
The little boy was then assessed for tongue tie – when a baby’s frenulum is too thick or too stiff – as it was confirmed he wasn’t latching properly, and he had the procedure to correct it.
The youngster breaks out in a sweat in a reaction to foods (
Shannon Doyle)
Although Shannon had cut out eggs, gluten and oats, which was suggested by members of a group for parents that have children with allergies, the daily agony continued.
“It was a very helpless situation and this went on for many more weeks,” Shannon, speaking this Allergy Awareness Week, told the Mirror.
“I had no sleep plus the worry I had for him – it was pretty difficult as I had no idea how I could console my son or stop his symptoms.
“He had extreme sweating when sleeping to the point where I had to change the sheets throughout the night.
“I thought it was just that I had a fussy baby because my oldest child was a little unsettled as a baby but nothing like this so I decided to try and see what I could do.”
At around five months old, he was admitted to Adelaide Children’s Hospital for one week for investigations.
Shannon says tests showed there were problems with his immune system – he was neutropenic – a condition where you have a low number of white blood cells which makes it hard to fight infection – and had low levels of immunoglobulins in his blood, meaning his immune system wasn’t working as it should, among other things.
But there weren’t just health concerns for Nathaniel, as his mum became severely underweight whilst breastfeeding him.
She claims to have lost 20kg, weighing just 53kg at 5ft7, after restricting her diet to just lamb and salad so as not to aggravate her son’s condition – as she found his symptoms stabilised when eating these foods.
The mum has been back and forth with immunologists in a bid to find out the cause of her children’s allergies (
Shannon Doyle)
Both children have had long stints in hospital following bad reactions (
Shannon Doyle)
Her potassium levels and dropped, and they became so low she collapsed on a number of occasions.
The distressed mum was exhausted and was told by doctors she had no choice but to stop breastfeeding.
“It was very difficult during that time but I would do it for him again in a heartbeat,” Shannon added.
When she then began to wean Nathaniel onto solid foods, it took them years to figure out what he could eat without getting ill – and have now narrowed it down to just nine foods, which includes salmon and sorghum pasta.
After seeing countless immunologists, both Thea and Nathaniel were diagnosed with MCAS last year after they flew to Queensland to see a specialist allergy doctor.
Shannon says Nathaniel was also diagnosed with solar urticaria – a rare allergic reaction to sun exposure.
The mum fears her son is not getting enough nutrients, but it’s an uphill battle for Thea too, who Shannon claims has aquagenic urticaria – an allergy to water.
The toddler can currently only live off an amino acid, allergen-free formula – neocate lcp – and without it, there could be devastating consequences.
Shannon says she has bad reactions to all foods, but in the last few months has tolerated pumpkin.
“It has been very scary because it is the only formula she can tolerate as we have tried all of them and they failed miserably,” Shannon admitted.
Hives on Thea’s foot (
Shannon Doyle)
“I couldn’t continue to breastfeed her as she was still passing blood and very sick from my milk despite me cutting out pretty much all foods.
“Thea still doesn’t tolerate any water at all and the amount of water used to make her bottle has to be exact otherwise she will be up screaming all night in pain.
“When she has plain tap or filtered water, just 10ml gives her hives, constipation, tummy pain and is awake every half hour crying.
“It’s not immediately but after say 15 minutes she starts to hiccup and then it goes from there.
“There’s no explanation for it and immunologists are stumped.”
Shannon says she has tried every type of bottled water in stores, but to no avail. And the food trials are a tough process.
“Food trials are a nightmare because the reactions last for days but she cries for the food again because she loves to eat,” Shannon said.
“During the pandemic, we almost ran out of formula for her, which was really frightening but thankfully the local hospital managed to get more.”
Shopping for the pair can be complicated, as the mum, who is a photographer and studying to become a mental health nurse, tries to get quality ingredients with her son having such a restrictive diet.
Despite their illness, Shannon says they are ‘little happy people’ (
Shannon Doyle)
They live rurally, so it can be a tiresome task driving out for fresh ingredients, but prefers to go to the fishmongers. She usually bulk-buys ingredients online if possible.
Meal times can also be tricky cooking different meals for each family member and, after splitting from the children’s dad last year, it can be difficult to navigate their allergies between two houses.
Shannon can also feel shame and judgement from other parents at kids’ parties that don’t understand what she is going through.
“Meal times have been a bit of a nightmare,” Shannon said.
“Going out for dinner or lunch has been impossible as I couldn’t eat anything whilst breastfeeding and my son was the same, so I would have to take his food along wherever we went and I still do.
“He feels left out a lot.
“I definitely struggle with other parents – when I say that my son is allergic and cannot eat the snacks that other kids are having, I feel like they think I’m just being a mean parent.
“It’s difficult in social situations because my daughter is continuously looking for crumbs and I cannot relax.
“She just wants to eat and I feel like a horrible parent at times but I know deep down it’s for their own good that I protect them.”
On top of her very precise and expensive shopping list, Shannon also has to fork out for medical bills.
Recent medications they have trialled cost her $600 (£318) while she has been taking her kids to multiple private gastroenterologists and immunologists in desperation.
Shannon says Thea is allergic to water (
Shannon Doyle)
Their rare conditions have ‘stumped doctors’ (
Shannon Doyle)
She says she also spent $6000 (£3,000) for a fecal transplant – a procedure that places the stool of a healthy person into the colon of someone who’s ill – for her son.
“I am very scared for their future and if they will get worse. No one can tell us anything because it’s so unknown about the condition,” Shannon revealed.
“I’ve tried multiple naturopaths, nutritionists, immunologists and no one is able to help.
“It’s the little things that no one has to think about that makes it hard.”
But despite it being an incredibly arduous journey, the two youngsters are still happy little people, and it makes the Doyle family appreciate special moments.
“Thankfully both kids are incredibly happy when not in a reaction so I think it’s allowed me to appreciate the happy times more than I did with my first child who was born with no issues,” Shannon said.
“I’m grateful that they are well ahead with speech and other things that I thought might be an issue. Looking at them you would have no idea how much they suffer.
“It makes you appreciate the simple things we take for granted such as eating or drinking water.”
For any other parents experiencing similar issues with their children’s allergies, Shannon encourages them to start a journal to keep a record.
“I had to become a detective and keep a journal every day to note all of the symptoms so I knew when something didn’t agree with them,” she explained.
“I had no idea a person could be allergic to everything.
The family appreciates happy moments even more, Shannon says (
Shannon Doyle)
“Because we live rural, we would often get new doctors at the emergency department and I would have to explain the situation, some were great but others thought it was crazy.
“Getting a diagnosis has been so tiresome but I have had massive support from an immunologist called Dr Sam Mehr, who we saw privately originally when Nathaniel was a baby and then after that, publicly through the hospital at the Royal Children’s.
“He helped me feel as though I wasn’t losing my mind, reassuring me at my lowest points with the kids. Without him, I would have been totally lost.
“It is a very lonely journey but I am grateful for a group of mums that I met online who are in a very similar situation and we support each other.
“I get messages from other mums asking for help because they know of our journey and I help to guide them.
“Raising awareness is so important for other parents and doctors, and it will make a huge difference, especially for all the struggling parents.”
