A day managing FPIES

by Odette Wilcox, mum to Maggie 2.5 (diagnosed with FPIES at 6 months old)


I am so fed up of trying to be brave and not complain about Maggie’s condition! I try so hard to avoid harping on about it, to not make it the thing that defines Maggie, as it’s not. But I so want people to understand this awful condition...
so other children and parents don’t have to feel so alone! So people might understand more about
severe non IgE allergies. So, I have decided to write about just one aspect of a day managing FPIES...

'I tried a new baby group today, a lovely group in a small village hall...
we were so pleased to have found a group, age appropriate and full of great toys! Half an hour later I felt stressed and alone, unable to tell anyone why I was fighting back tears or why I wanted to run out of the hall with my daughter and why I was walking around picking up food that was everywhere!

Someone lovely had baked homemade cakes for the children, which they loved. The children were all walking around eating the cakes (and why shouldn’t they?) It’s a great experience for them...but for me and Maggie, it was a nightmare. Cakes containing dairy and eggs (both of which have caused reactions leading to hospital for Maggie) were everywhere, on the floor, the slide, on toys...everywhere!!!

How do you make a 15 month old baby understand that if they eat the yummy looking lump of cake off the floor, they will be so ill that they will be in hospital?
So instead I followed Maggie around picking up every crumb, looking like a neurotic mom! Then, mummies began giving their children healthy snacks of banana, something Maggie is also very allergic to. Again, why shouldn’t they give their children healthy snacks ...it's food after all. How could they possibly understand how the whole experience was making me feel sick with worry and panic that Maggie might eat some of this unsafe food...it's food for goodness sake... How could they understand that if she ate it she would be in hospital... I wouldn’t have understood before I had a child with FPIES.

I could have tried to explain, but then I worry that I seem like a worrying parent, possibly over exaggerating ‘intolerance’ (when all you want to shout is ‘it’s not just a bit of tummy pain!)... It’s an allergy that takes over every aspect of our life.
It’s a violent reaction which makes my baby so ill that her body shuts down, she goes into shock and looks life every bit of life has been drained from her.
I wanted to say, how would you feel if there were little bits of poison all over the floor that would put your baby in hospital?... how would you cope letting your baby toddle around in between them?...but how could I, because they would never understand, because its food. They are simply feeding their children and why shouldn’t they? Why should they try and understand a condition that you can’t see, that you can’t understand...especially when thankfully my daughter looks so beautiful and healthy.

So instead I smile and pretend everything is ok, I fought back the tears and the feeling of panic and resisted the urge to run out of the hall and keep my daughter safe. Then snack time arrived......corn cereal and chopped up banana (both of which have put Maggie in hospital). It was just too much... I drove Maggie home, in floods of tears; feeling lonely, sad and guilty.... All she wanted to do was stay and play and all I wanted to do was take my daughter to play with other children. It seems so unfair that she has to be so restricted. That a simple baby group outing could pose so many dangers to my daughter and make me feel so alone and upset.'

This article was written before I found FPIES UK and the inspirational founder Louise Littler. The group offers support, understanding and above all the chance to talk to people who really understand the pressure and additional care that FPIES children need.

Maggie is now two and a half, we still face the same challenges. However, I no longer feel so alone! Maggie is a beautiful ray of sunshine, who I could not imagine being without. She has enriched our lives immensely… Some days are still very hard and the nights can certainly be very long. But now on those day, I know where to go for support, understanding and help. I now feel informed, empowered, understood and not nearly so neurotic!

What is FPIES?

FPIES (Food Protein-Induced Entercolitis Syndrome) is the most severe form of delayed (non-IgE mediated) food allergy. It usually first occurs in children under 12 months. It is frequently misdiagnosed as a tummy bug or blood infection (sepsis) due to the increase in white blood cells that accompanies a reaction.

FPIES causes profuse vomiting and lethargy, these children vomit to the point of bile and become very sleepy or even unresponsive, typically 1-2 hours after the ingestion of the causal food. In 20% of cases the child will also go into shock. Other symptoms include pallor, low blood pressure and low temperature. 25% of children may also have profuse diarrhoea.

The only current treatment is the replacement of fluids. Some anti-sickness drugs (such as Ondansetron) seem to be helpful, however more research in this area is needed.

Many of the foods that cause FPIES reactions are considered hypoallergenic. Rice, oats, chicken, turkey and sweet potato are common triggers along with cow's milk, soya, eggs and banana. It should be noted that ANY food can cause a reaction and without a test to determine which foods are safe, FPIES parents are forced to use a trial and error approach. The only way to find out if a child is going to react to a food is to feed it to them and wait! The pressure and guilt this places on a family is immense. The guilt you feel having fed your child something that has made them ill, is extremely distressing.

FPIES is not fatal but is very scary! Many parents have no idea what is happening to their previously well child. The whole experience can be extremely overwhelming and frightening for the whole family. Because of the violence of the reaction, FPIES has a dramatic effect on the families' quality of life and it can have numerous behavioural effects on the children. Children also often have regular spells of stomach pain and distension, which can repeatedly lead to poor sleep and increased night waking due to discomfort.

It is not uncommon to visit a primary care professional who is unaware of FPIES, its presentation and treatment. FPIES is to non-IgE food allergy what anaphylaxis is to IgE food allergy – the most extreme form of the condition. Hopefully by spreading awareness, FPIES will become more widely recognised and understood.


More information from FPIESUK.

Written by Odette Wilcox, mum to Maggie 2.5 (diagnosed with FPIES at 6 months old)
I am a mum of three. Two teenage boys, William and Charlie and now Maggie. I am a Primary School Teacher, although I now only work part time due to Maggie’s condition and care needs.

April 2015


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