FPIES - Max's Story

FPIES - Max's Story<

FPIES - Max's Story

When it comes to food allergies, many people are aware of the more common trigger foods including dairy, gluten and nuts.

But there’s a widely unheard of condition affecting babies and children across the world which can trigger a severe reaction to almost any food - typically profuse vomiting, diarrhea, low temperature and lethargy.

Some of those affected only have a handful of ‘safe’ foods although thankfully many others can eat a much more varied diet.

The condition is known as FPIES (food protein induced enterocolitis syndrome) and while many people will live their lives never even hearing about it, for others it can be a daily struggle going through food trials to try and introduce their little one to new flavours.

One of the Frestival team has first-hand experience of this, and she shares her story here...

For us, our FPIES journey started when Max was five weeks old. He was still very small having been born at 4lb 13 and spending his first couple of weeks largely nil by mouth as he was very poorly and needed surgery at ten days old.

Once we went home, he began putting on weight slowly but his paediatrician suggested we should supplement the expressed breastmilk he was having with some formula to try and get him piling on the pounds and ounces more quickly.

Three days later we were in hospital watching the professionals scratch their heads wondering how our tiny baby had lost weight, was pale, lethargic and cold.

Tests revealed his blood was too acidic and his liver and kidneys weren’t functioning properly. There was talk of a return to intensive care in Birmingham, of an underlying liver condition, of more surgery.

Thankfully he stabilised enough to be kept in Telford and when his paediatrician came to see us he told us he was fairly sure it was a dairy allergy. That was the first time we’d heard of the acronym FPIES.

Sadly there’s no test which can be done to confirm the condition (allergies can either be IGE which can be tested for, or non-IGE which can’t and FPIES falls into the latter category) but the treatment is very simple: eliminate all triggers from the diet. This involved me going dairy and soya free, and Max having special formula as well as my expressed milk.

Weaning has been very different from the process we went through with our daughter, who has no known allergies, and we currently trial a new food each week.

He is given a small amount of the food each day and if he hasn’t reacted in seven days then it’s added to our list of ‘safe’ foods.

Many children outgrow FPIES by the time they go to school so we’re hopeful Max will be able to eat a varied diet no matter how many triggers he ends up having while he’s still a baby.

However, we have been warned the severity of his body’s reaction to dairy could mean he won’t ever be able to tolerate it. That’s a bridge we will cross when it comes to it.

Many FPIES children are also diagnosed with failure to thrive and I’ve read lots of stories over the past few months of little ones never getting to ‘baseline’ (having no symptoms) and mothers desperately only eating two or three foods themselves to try and stop their baby reacting through their milk.

It makes us feel very thankful Max has been able to continue having my milk, tolerates the dairy-free formula well so there’s always been that option available to us, and is doing well with his food trials.

Stopping his toddler sister sharing her food with him is a source of constant worry and I’m sure we will have similar trips to A&E as the one we had on Boxing Day after an accidental dairy exposure. When he goes to nursery, the staff will have to be fully briefed on the severity of his allergy and the importance of only giving foods from the safe list, and no doubt there will be many children’s parties in his future where I hover over him like a hawk checking he doesn’t ingest anything he shouldn’t do.

FPIES is a difficult condition - it means documenting every single thing your child eats, preparing everything carefully to avoid cross contamination, worrying every time they try a new food and panicking when they have a symptom which could be the start of a reaction.

But Max’s list of safe foods is growing, and he is managing to steadily put on weight. Gone is the 4lb baby and in his place a healthy robust little nine-month-old boy who is slowly starting to hit milestones. He might not be able to eat cake for his first birthday this March, but one day he will have enough safe foods to do so!

Visit https://www.fpiesuk.org/ for more information about the condition.

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