Rocking my one-month-old girl Lyla in my arms, I felt like crying.
‘I just don’t know what’s wrong with her,’ I despaired to my partner Matthew, then 32.
Since birth, Lyla had cried constantly, barely slept and had suffered from rashes and reflux. She wasn’t gaining weight, wheezed and had blood and mucus in her poo.
Desperate, we took her to one doctor after another, but nobody had answers.
At four months, she was referred to an allergist who changed her formula and recommended starting her on solids. With each new food, however, she’d vomit and break out in hives, ending up in an ambulance.
At six months she was admitted to hospital for blood tests, a gastroscopy and a colonoscopy.
At seven months, we finally had a diagnosis. There was an issue with Lyla’s immune system.
‘Lyla has mast cell activation syndrome, or MCAS,’ the specialist said, explaining it’s a rare condition affecting the body’s mast cells – a type of white blood cell important to the immune system.
It causes repeated episodes of the symptoms of anaphylaxis – difficulty breathing, hives, swelling, low blood pressure and diarrhoea.
It was petrifying, and we discovered so many things set her off, including solid foods, cold, and chemicals. She was allergic to scents, including my perfume, as well as dust, candles, sunscreen, most of her toys and clothes, and particular plants.
It was like she was allergic to everything.
Her immunologist put her on antihistamines and mast cell stabilisers to try to control her reactions and manage the mast cell activation syndrome, and a low-histamine diet.
But the minute she ate anything she got wheezy, developed a red rash around her mouth, and started vomiting up blood and mucus, ending up back in hospital.
We finally found a milk formula she could tolerate and took her off solid food.
Mast Cell Activation Syndrome (MCAS) is a condition where mast cells, a type of white blood cell, release too many chemicals into the body. These chemicals can cause symptoms like hives, stomach pain, headaches, and trouble breathing. People with MCAS might have allergic reactions to things that don’t normally cause problems. This can make daily life challenging. Symptoms vary from person to person, and they can range from mild to severe. MCAS is often difficult to diagnose because it shares symptoms with other conditions. Treatment usually involves managing symptoms with medications and avoiding known triggers.
What is Mast Cell Activation Syndrome (MCAS)
We got low-allergen bedding, air purifiers in every room, vacuumed daily, and dressed her in high quality cotton.
Lyla improved, but still had a huge intolerance to the cold. When the temperature dropped, she began wheezing. If her bath water was a bit cool, she’d struggle to breathe. And cold water made her tongue and face swell up.
We had to keep her drinks and bath water warm and ensure she was permanently rugged up.
Just before she turned two, we reintroduced solids. We gave her millet puffs, apple, buckwheat pasta, carrot, potato and celery and finally chicken – the only protein she could tolerate.
With each new food we gave her, we held our breath but, incredibly, she was okay.
Now three, Lyla is doing really well.
She attends childcare three days a week while I study to become a nurse.
Luckily she understands she can’t have foods other kids can have.
‘They give you a sore tummy and make you itchy,’ we tell her.
And I’m sure she’s been here before!
Our son, Isaac, five, was diagnosed with a milder version of mast cell activation syndrome, so for dinner, I make three different dishes.
As long as my children are happy and thriving, I’m thrilled. ●
