The reality of living with FPIES

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On April Fools Day, at just 11 days old, our daughter Daisy projectile vomited for the first time. We had a laugh about the irony of the day. She was just playing a prank on us after all – right?! Wrong. Daisy had FPIES and the beginning of a long battle was starting for us.

Our daughter Daisy was born in March 2016. It was the happiest, and scariest, day of my life, as I had to have a c-section and Daisy was born, weighing 5lb 13oz at 38+4. My entire pregnancy had been difficult and when she was finally born safe I was so relieved. We went home, and started our life as a family of three.

What is FPIES?

FPIES, or food protein-induced enterocolitis syndrome, is a food allergy that affects the gastrointestinal tract.

What are the symptoms of FPIES?

Profuse vomiting (often projectile), diarrhoea and dehydration are the common symptoms. In turn these symptoms can lead to extreme lethargy, changes in body temperature, changes in blood pressure and then other associated medical problems.

Daisy has suffered from all of these symptoms, as well as seizures brought on by the sudden change in her body temperature. The sickness is unlike any sickness I have ever seen or experienced before from a baby. 

If you are someone who has had the norovirus then you may have an idea of the speed at which sick can travel… When a 10 day old baby is doing that it is so terrifying. Then when you baby begins doing it 6-8 times per day, every day, you know there is something wrong.

Getting a diagnosis of FPIES

The standard food allergy tests (skin pricks) won’t diagnosis FPIES. Instead it is a process of elimination. The severe symptoms of FPIES are usually quite unique to babies with FPIES, but because of the negative allergy tests it can take a long time to get a diagnosis.

Our own diagnosis journey was a long one. For many months we were told that Daisy had CMPA, and then when we begun weaning, at 5-6 months, it became clear she had more issues than just dairy. Be sure to check out my weaning essentials. 

Our daughter’s allergens

Soya and chicken were two of Daisy’s main allergens. Along the way I’ve been told that I’m a hypochondriac, my own GP has told me that he thinks I use the 111 too frequently, and then we FINALLY made it to a dietician and then an allergist.

Letters were sent and it was confirmed that Daisy has FPIES. My GP was informed that Daisy needs to go to hospital with the profuse vomiting because of the risk of dehydration, and other problems.

How we deal with FPIES

The first few months were absolutely terrifying. We went through several prescription only formulas, before finding Neocate, which works for us. Daisy was also prescribed medication for her GORD.

For the first six months of Daisy’s life we were basically just surviving. Trying to get through each day. Trying not to argue or shout or be angry at the world that our tiny baby was suffering.

Now Daisy is 4 years old and we are pros, almost, at dealing with FPIES. We don’t rely on health professionals to spend months and months fobbing us off and instead we inform ourselves with information.

Feeding our child with FPIES

Daisy has food that I almost always prepare myself, and when we are out I always take food with us. On occasion we have trusted restaurants with her allergens and they have failed us. I’ve made complaints, and helped them change their processes for the future, but ultimately I don’t want Daisy to have to keep suffering because of someone who doesn’t love her or understand how dangerous her condition is.

Living with a child that has FPIES is hard. It has been soul destroying at times. Watching my tiny baby have seizures, and now my older child understand what has happened, after covering us all with vomit is so sad.

Fortunately my husband and I are both quite mentally strong. We’ve dealt with stupid comments, put downs and people assuming they know our daughter better than us. At 4 years old (almost 5!) we are hopeful that Daisy is just one allergen away from outgrowing FPIES now, as the majority of children will outgrow it by 3, and some by 5.

We have been having food trials in hospital for the last 2 years or so, and Daisy has recently outgrown chicken – which was her worst allergen!

I see children with CMPA outgrowing their allergies frequently on my Instagram and it makes me feel confident that my FPIES carrying girl can get there one day too – just soya to go now as of February 2021!

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