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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.
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. 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.
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 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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