Lola's tiny body contorted and arched in pain. She was screaming and crying and as her tears fell, so did mine.

Her agony was because I'd just tried to breastfeed her. Mine, because to see your baby in that much pain and not know what the matter is or how on earth to help her must be the one of the most distressing things a parent can face.

No-one knew what was the matter with Lola

This was how it always was with Lola since she'd been born prematurely at 35 weeks and five days by caesarean at Nepean Hospital in Sydney.

At first I'd put her constant irritability and inability to settle down to her being a premmie and the couple of days she'd spent in the neonatal intensive care unit. Then I thought that maybe it was colic. After all, I wasn't a first=time mum. I had three sons at home and I knew colic was something a lot of babies suffered from. But in the first few weeks of my daughter's life, it dawned on me that her distress wasn't colic. Lola was unwell. Really unwell. I just didn't have a name for it. No-one did.


Lola as a newborn, before the diagnosis of FPIES.

All I could do was hold her

Despite repeated trips back to  the doctor for Lola's pain, her mottled skin, blood in her stools and constantly raw bottom, no-one seemed to know what the matter was. Everyone had a suggestion, of course. From baby wipes causing the nappy rash, to Lola being lactose intolerant and then intolerant to soy, to over-feeding her being behind her pain and distended stomach. I was given plenty of advice but whatever changes I made (using water wipes to cleanse her, for example and cutting out all dairy and then all soy from my diet), had no affect on my little girl. The only thing that calmed her was me holding her so that's what I did. 24/7.

The sleepless nights took a toll on us all. My husband, Stephen, had to sleep in another room as I was up and down every two hours to feed Lola and I was too  exhausted to feel I could be a proper mum to our boys, Koby, seven, Lachlan, five, and four-year-old Mason. If it hadn't been for the support of Stephen, my mum, Dianne and my lovely Grandpa Eric, I don't know what I would have done.

Lola's reaction was catastrophic

When Lola was five-and-a-half months old, I decided to try her on baby rice. My milk was obviously a problem for her and we were yet to find a formula that was safe for her, so it made sense that the less she fed from me, the better she would be. The consequences of that decision were truly awful. I have never seen so much diarrhoea. It was coming out of her continually, awake or asleep, she had a constant stream of it.

We went back to just breast milk for a couple of weeks in order to settle her down. So, rice was obviously out of the equation. How about baby oats? Lola's reaction to that was catastrophic. I was by myself at home with her. Two hours after giving her a small amount of oats, she started to vomit. Over and over again, her tiny body spasmed as she retched. She vomited so much that she went into shock. Seeing her floppy, unresponsive little body was terrifying. I called an ambulance immediately but before it could get there, Stephen arrived home. We didn't wait, just jumped in the car while he drove as fast as he could to Westmead Children's Hospital.

There is no treatment and no cure

And that's when we got the breakthrough. An allergist, Dr Mehr, diagnosed Lola with a condition called Food Protein Induced Enterocolitis Syndrome (FPIES). I'd never heard of it but it turns out that it affects just 0.34 percent of the population and is a delayed allergic reaction in the gut to proteins in food. It scared me hearing that, and I was even more worried when it was explained that there is no medication for FPIES. You just have to try avoiding the foods that cause the greatest reaction and wait for them to grow out of it. When that is, who knows? Maybe by the time Lola goes to school she'll be able to eat food normally like any other kid. But there are no hard and fast rules for FPIES. No definite foods to avoid, no definite age for them to get better. It's all trial and error.


Lola with mum, Karina.The little girl can't let even a crumb of food pass her lips.

Lola's now 14 months old. She's bright and beautiful but she can still only have my breast milk and even that causes her constant diarrhoea. She's never had a normal nappy.  I feed her every two to three hours, am scrupulously clean in the house so that she can't eat any crumbs the boys drop and watch her like a hawk when we're out. I feel uncomfortable at social gatherings because of the risk that swallowing even a tiny piece of food would have for her. Her brothers are great with her, really protective and very careful about washing their hands and faces after they've eaten so there are no traces of food around.

I can't risk her eating a crumb

Lola's small for her age and isn't walking yet. When she needs antibiotics they have to be compounded (in powder form without any preservatives or colourings) so she can take them, she'll need food therapy when she's older because she won't know how to eat and speech therapy too, as learning to eat is linked with learning to talk. I hold her a lot because it gives her comfort from the pain and because I worry she might find a stray crumb. I can't risk her going into shock.

As for me, I follow a restricted diet - no oats, rice, dairy or soy. I don't eat bread anymore either, just some fruit and veggies. Shopping takes forever because I check the labels so carefully but when you're a mum you'll do anything to help your child, won't you?

Lola's due to have an endoscopy in the next few weeks where she'll have a tiny camera fed down her throat to see if there are any other underlying problems and have a naso-gastric (NG) tube fitted next month which will go from her nostrils straight into her stomach in order for her to try a new prescription formula.

We're playing the waiting game

Other than that, it's just a waiting game. Waiting to see if and when Lola gets better, waiting to see if there's someone, somewhere in the world who can help her. Until then, all I can do is hold my brave girl to comfort her and pray that one day, she'll be just like any other kid and tucking into ice cream with a sweet, sticky grin on her face.

For help and support about FPIES