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FPIES by Louise Littler

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Louise LittlerTell us a bit about yourself….

I am a qualified veterinary surgeon, charity founder and stay at home mum. I live with my husband Mark and my two children on a dairy farm in the northwest of England. In September 2013 I founded the Facebook group FPIES UK and I later created a website of the same name. The aim of the group is to offer much needed support to families dealing with FPIES and allow them to have a safe private space to discuss their worries and concerns.

What is FPIES?

Food Protein Induced Enterocolitis Syndrome – FPIES, pronounced F-PIES is a delayed food allergy which causes profuse vomiting and other symptoms 1-6 hours after a food (or formula) is eaten.

What symptoms distinguish FPIES from other conditions?

Acute FPIES reactions are different from immediate IgE reactions as the symptoms are delayed and primarily gastrointestinal (vomiting, diarrhea). There is usually no skin involvement, no hives, swelling or wheezing.

FPIES is distinguished from other delayed allergies by the severity of the reaction. An acute FPIES reaction occurs typically two hours after a food is eaten and results in profuse vomiting often to bile, babies become pale or blue and lethargic. Diarrhea may follow and some babies (around 20%) can go into shock.

The foods that typically cause FPIES can be a distinguishing feature too, as many of them are classed as hypoallergenic. Rice, chicken, turkey, oats and sweet potatoes commonly cause reactions. Cows milk, Soya and Egg are also common causes. It should be pointed out that ANY food can cause an FPIES reaction.

Tell us about your road to diagnosis…

I had never heard of Food Protein Induced Enterocolitis Syndrome (FPIES), until one spring evening in 2013.
I first encountered the word FPIES whilst sitting on my living room floor, next to my now sleeping and exhausted eight month old son, when in desperation I entered the words ‘chicken allergy profuse vomiting’ into my internet search engine.

My son had failed to gain weight well whilst breastfed, was sick frequently and wouldn’t settle at night. The GP diagnosed ‘reflux’ but I was convinced there was something else going on. We started weaning at 6 months and his symptoms got much much worse. He had 3 acute vomiting episodes on the 4th 5th and 6th occasions that we tried chicken, he projectile vomited until he brought up bile, became very sleepy and turned a funny blue colour and stayed that way for a week after each episode.
I suggested FPIES to the GP who was unconvinced but referred us to an allergy consultant who was unfamiliar with FPIES. At 12 months old we finally got a diagnosis when we paid for a private consultation with a doctor who knew about FPIES.

Prior to diagnosis my son had skin prick tests, blood tests and endoscopy with biopsies taken to rule out IgE allergies and EGID.

How is your child’s condition managed?

My son’s FPIES is managed by strict avoidance of his trigger foods. As there are no tests to know which foods are safe, we introduce foods one per week and look for symptoms. Not all foods cause the profuse vomiting, some cause lesser symptoms: reflux, diarrhea, mucus, rashes, eczema, bloating and night waking. Those foods are classed by our consultant as chronic FPIES/ non- IgE allergies. In total my son has around 25 safe foods and 20 foods that cause symptoms (at age 2).

What would you like to say to a parent searching for a diagnosis?

Trust your gut, if you think something is wrong be persistent. Also be informed, read the information on the FPIES websites carefully. FPIES is doctor diagnosed but it is a PARENT managed condition.

Can you suggest some useful links and resources?

Websites

Articles

Facebook Groups

  • FPIES UK
  • FPIES (Food Protein Induced Enterocolitis Syndrome) Support

Blogs

References

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About Jenni

Faith, family and food pretty much sums up my life! I'm a happily married Christian mum of three and I live in Liverpool in the UK. I enjoy being creative and love the challenge of parenting, although I'm a physiotherapist in my spare time. I hope you enjoy my efforts and musings.....!

5 responses »

  1. I had never heard of FPIES until September when I attended a session on allergies led by Dr Meyer, and as she was enumerating the symptoms, I kept nodding and nodding… that was exactly how Jumpy was reacting to cow’s milk before she was diagnosed with her plethora of allergies. I wish I had been told there allergies other than IgE. Although milk would not have caused anaphylaxis, it was scary to see her vomit so violently and suffer from diarrhoea for days after ingesting dairy products.

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    • I bet it was scary! As parents we can be confronted so suddenly with such worrying symptoms in our children in response to food and the lack of knowledge and understanding we have makes it all the more frightening. Louise has done a great job at describing FPIES and has worked so hard at spreading the word about this condition. Hopefully us ‘allergy parents’ can work together to make the journey to diagnosis easier for others. I hope Jumpy grows out of it at some point.

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  2. Reblogged this on Itch, swell, ooze and wheeze and commented:
    Another great topic! This is very informative with lots of links for further reading.

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