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Diagnosing and caring for a child with FPIES

diagnpsingcaringchildfpiesThis is my story of diagnosis. It was important to me to share my personal views of what I have learnt of the condition. Please note: I have no medical qualifications so these are simply my views and opinions as a mother. 
Mother of 2, Claire Wootton

My daughter Elle was born February, 2008. She was a very easy and settled baby compared to her brother (born 21 months earlier) who was allergic to protein in cows’, soy and goats’ milk. He refused to take medicated formula so I lived on a strict diet and breast fed him to 14 months. At 3 months, we had our first trip to emergency after someone kissed his face after eating peanuts. From there, he was allergy tested and we discovered he was allergic to shell fish, nuts, and eggs. He had reflux for 10 months and never slept more than 45 minutes day or night. So, you can imagine Elle was a breath of fresh air.

She didn’t sleep either but I can handle that now. I always joked it couldn’t get much worse than Oscar (obviously, there is a lot worse life-threatening conditions that I am thankful for my overall healthy and happy kids). Both my husband and I were brought up on goats’ milk having a history of allergies, eczema and asthma.

Food Introduction

At six months, I began feeding some organic rice cereal to her. Being my second child I wasn’t as pedantic and would give her some veggies as well. But things started going horribly wrong. One day, she was throwing up, like she had developed reflux at 6 months.  Then the next, she would be fine. Then sometimes – for days – every time I fed her she would be sick, then she would refuse food. I new something was wrong but I had no idea. It seemed to come and go on different days.

I made a doctors appointment with my GP. That morning, I fed her a few spoonfuls of rice cereal and, right on queue (which usually never happens), she started throwing up at the doctors. The thing is that there is not much to throw up in a few spoonfuls so there is a lot of choking-like noises and spit coming up from such a small baby. Everyone is staring at me in the waiting room as my 2 year old destroys the room and I find anything I can to clean all the vomit as quickly as possible. My doctor is running late and by the time I get in, two people have started telling me how sick my daughter is and that she is choking. I am fighting my tears back now as I know this is not normal. My doctor sees the very last stage of the reaction and is very concerned by the mucus she was bringing up. Elle sits in her pram, lifeless and exhausted from the attack, just sleeping it off.

My GP refered us to the paediatrician a few days later. I was expecting to see him about a possible blockage in Elle’s digestive system somewhere. I am very lucky that when I explain to my paediatrician about all these weird symptoms, he looks at me in amazement and explains to me that he just left an FPIES seminar and he thinks she has FPIES (Food Protein-Induced Enterocolitis Syndrome).

We are admitted to hospital the next day and it becomes crystal clear. Her reaction follows the condition to the letter after eating rice cereal (well, drinking it as we had to give it to her in a bottle as she was not so impressed with this new food thing by now). In hospital, with no other interruptions, no other kids, and no other food i.e. veggies etc., it was easy to see the condition and its effects but in every day life it can be hard.

Elle was skin prick tested for allergies and didn’t have a single reaction. She does usually react with eczema and shows irritability with dairy as well.

Living with FPIES

From there, I was scared like every mother that has contacted me since then has been. According to the hospital, Elle was only the 12th person to be documented as having FPIES to rice. I could only find one person to correspond with in America whose daughter had just grown out of FPIES. Like every mother dealing with a rare condition, I felt alone as people would tell me all their theories behind allergies and offer all their advice not knowing a single thing about this condition. It is the same as people saying all cancer is the same, it isn’t and neither are allergies.

Firstly, my paediatrician gave me details of two US websites which I found very useful. Here are links to the information on them that helped me:

  1. Pediatrics – The Official Journal of the American Academy of Pediatrics
  2. Kids With Food Allergies

FPIES affected us the same as my sons’ allergies in that we had to eliminate food (my favourite, risotto) from the family diet and make a lot of foods and substitute products from scratch.

My theory is that it is fantastic if a child is raised on good fresh meat, veggies and fruit. It wont hurt them so don’t worry about what they can’t eat – just focus on what they can eat. I was careful when I introduced any foods and my biggest tip is do not EVER introduce what I call a mixed product like a baby cereal that contains other cereals. Only one ingredient at a time. Give your child a bit inside the lip on the first morning, next morning a teaspoonful, then next day a few teaspoons and keep going. By the end of the week, you will be 100% sure whether they have FPIES to that as well.

If your child throws up a few times, get to the hospital. I think if you have a child with this condition unless everyone else in your home has gastro you need to eliminate it as an option when you child throws up. Prepare for FPIES as the condition presents the same but doesn’t end the same. The FPIES reaction needs medical help.

To help emergency medical centre staff understand the condition, I recommend you either get your doctor to print out a letter or you print your own information from the websites above and keep this in your wallet as no one knows what I am talking about when I turn up at emergency or the chemist.

I became very confident with Elle’s condition and, at times, even kept her at home and just ensured I kept the fluids up. I regret this now as they can go down hill fast and they really need the fluids through an IV. The other observation is they recover better and quicker when they have had the IV fluids.

Recovery comes in two forms – getting their energy and bounce back but also be very aware as their little tummies are sensitive for days, just like a bad bout of gastro. Sometimes, Elle would continue to throw up anything after a reaction – I learnt to feed her only a small amount of potato in the days after an attack and just keep up the breast feeds and water.
For those of you who have also had a child diagnosed with FPIES to rice specifically, here is some extra information.

  • Rice is quite simple in its normal form but the really hard part is rice flour. It is used to thicken a lot of products. It is used in most sausages, rissoles, sausage rolls, a lot of cakes, baking powder etc. You need to check everything.
  • I found Aldi’s normal sausages don’t have rice flour
  • I found a local butcher makes sausage mince with wheat flour so you can make your own sausage rolls for parties and get their sausages and rissoles.
  • I found Anchor baking powder (stocked at Coles) doesn’t have rice flour. I replace self raising flour (as I can’t confirm if it has rice flour or not) with plain flour and baking powder.
  • Be careful of things that say anti-caking agent. Elle had a reaction to a bar that had fruit inside it (something like a K Time bar, I think).
  • Always check tablets and medication as I have come across a few that use rice flour. You have to remember that rice used to be known as (or maybe still is) the least allergenic food so it is commonly used.

Is there a light at the end of the tunnel?

Yes there is. A lot of the information says that they grow out of FPIES by 3. The person I had contact with in America had a daughter that grew out of it at 2 and a half. My daughter had a reaction at 1 and a half and, while she threw up 5-6 times, she coped quite well and didn’t seem to be as exhausted and floppy with it.

Now it is a few weeks before her 2nd birthday. I gave her a few mouthfuls of rice and … nothing!  We are so excited that I think everyone will be able to hear my screams of delight the morning after we all sit down to risotto for tea. You will laugh when I tell you that rice is one of my favourite things to eat. When I was pregnant, I ate it with pepper as my craving and safe food to avoid nausea so you can imagine I am going to be one happy mum.

Are you alone? Honestly, you will be alone with this condition because of its rarity, but don’t worry about other people’s opinion. Unless they know anything about this condition in particular, it is my belief that they really shouldn’t comment. I posted a thread when Elle was first diagnosed, looking for other people and since then, I have been contacted by a few mothers whose children have since been diagnosed so there is definitely a few of you out there.

I have heard through specialists that FPIES to rice is a lot more common than people think and, as with most allergies, it is becoming more and more common. Someone please find out why!

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2 comments so far -

  1. My daughter was also diagnosed with FPIES at 6 months to both rice and dairy. She was cleared diary at 18 months and rice at 2 years. She was my third in a family with no family history of allergies and similar this account was difficult to deal with alone as the condition is hardly heard of!

    We now have a fourth and this week are giving her rice as a first solid. So far so good she has passed 4 teaspoons on her third day! I have been very worried this week and during my pregnancy really hoping that history wouldn’t repeat.

    It’s a huge relief that she has so far passed on rice but I have learnt my lesson and will continue to trial one new food at a time until she passes! I am writing this now to gave others hope that it does not necessarily have to repeat. A big difference I noticed with my 3rd, I breastfed for 12 Months and she choked on almost all feeds and scared the hell out of me. This one no such concern. I wonder if it’s linked!

    My thoughts are with anyone who has been diagnosed with FPIES but remember most children grow out of it my 3!

    • Hi Bec. Thanks for your comment and for sharing your story with us. It will be reassuring for other parents to read this and to know that history doesn’t always repeat itself. All the best to you and your family. Take care xx

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