Global FPIES Day – The reality of living with FPIES

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Our daughter Daisy was born on the 21st of 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 full term (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. Then on April Fools Day, at just 11 days old, Daisy projectile vomited for the first time. We had a chuckle. 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.

Daisy at one day old - Global FPIES Day

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.

Daisy sleeping in her cot - Global FPIES Day

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. Soya and chicken are two of her other 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.

Daisy eating carrots and bolognese - Global FPIES Day

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 is also on 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 18 months 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.

Daisy playing with a toy - Global FPIES Day

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 baby that has FPIES is hard. It has been soul destroying at times. Watching my tiny baby have seizures, and cover us all with vomit is so sad. Fortunately my husband and I are both quite strong. We’ve dealt with stupid comments, put downs and people assuming they know our daughter better than us. At 18 months old we are hopeful that Daisy is around halfway to outgrowing FPIES now, as the majority of children will outgrow it by 3, and some by 5. When the time comes we will have food trials in hospital, and hope for the best. I see children with CMPA outgrowing their allergies frequently on my Instagram and it makes me feel confident that my little FPIES love can get there one day too.

Today is Global FPIES Day and I hope you’ve found this post insightful.

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Global FPIES Day - 14th October 2017. Find out more about FPIES, our experiences with FPIES & food allergy syndromes. Parenting, allergies, CMPA, reflux

4 Responses

  1. Lesley Bain December 30, 2017 / 9:09 pm

    I’m a mum of 4 and Nanny of 6 and I’ve never heard of this. She is very beautiful little girl and a credit to her strong parents. Having been through various illnesses with our little ones I know how unbelievably stressful and never ending it can be.

    • katykicker December 30, 2017 / 9:33 pm

      Yeah it really is isn’t it. No matter what is wrong having anything wrong with your child can be so said can’t it.

  2. Sarah February 28, 2018 / 10:29 am

    Oh Katy! You and your little family have been through so much! I get sooo angry when I hear about drs fobbing parents of. As if you weren’t going through enough at the time without a dr saying those things 😡. Anyway, as you said and it’s obvious to see that you and your hubby are strong amazing parents and people, your doing an amazing job, id never heard of this before following you, so getting the word out there is invaluable well done chuck xx

    • katykicker February 28, 2018 / 10:54 am

      It’s so hard isn’t it.

      The worst thing for me was when I complained about the Doctor he is in charge at the practice so it was him personally that responded to me. So ridiculous!

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