One small step… one giant leap (our life with FPIES)

This blog post has been a long time coming but I feel like now is the right time because it is a positive story rather than a negative one about our life with Food Protein-Induced Enterocolitis Syndrome (FPIES). I have briefly written about our youngest daughter Indie’s, rare food intolerance before but to give you a very brief background, Indie has acute reactions to certain (unknown) foods and the acute reaction symptoms are profuse and prolonged (usually 2 hours) vomiting until she goes into shock (pale, clammy, unresponsive, high heart rate, low blood pressure, dehydration). It is scary and we have ended up in the Emergency Department 4 times, where unfortunately they have not even know what FPIES is. There is no cure, there is no testing and there is nothing you can do once a reaction begins (except get to hospital, fluids and monitor). The symptoms are never instant, for us they have always been exactly 3 hours after ingestion of a trigger food and it has never been on first exposure of that food (it has always been on day 3-4 of eating the trigger food). All of these things make it very difficult to know what she will react to. FPIES is a non-IgE food allergy, which unlike classic food allergies, cannot be diagnosed with readily available food allergy tests such as skin prick tests.

We were extremely fortunate to get an early diagnosis because our Paediatrician was familiar with FPIES and had previously diagnosed it in other children. For this, I am so thankful as there is a huge number of undiagnosed cases as it is so rare and often gets mistaken for other gastrointestinal illnesses or ‘just a virus’.  So, we now have to test every single food that she eats until we know it is a ‘pass’ or a safe food. Indie is about to turn two in June and she has passed lots of new foods, which we are so grateful for because there are a lot of children with FPIES that have absolutely NO safe foods and they are fed through a nasogastric tube. A typical new food test for us involves choosing a food which we believe has many nutritional benefits because we want her diet as broad and healthy as it can be. We test it over 5 days, starting with only 1 teaspoon and then increasing to 2 teaspoons on day 2 etc. If she has not had a reaction by day 5, we take a 2 day break from this food and then reintroduce it again on day 7. We do this because a reaction can occur after you let the gut rest from the new food and then reintroduce it. It is only at that point that we consider it to be a truly safe food.

Her major trigger foods that we know of so far are: Sweet Potato, Avocado, Dairy, Egg and Rice

Up until this point, Indie had never eaten anything processed or packaged. We buy fresh single ingredient foods (vegetables, fruit, fish, beef, quinoa) and cook everything for her. We usually do a big weekly cook up and freeze her food into little portions. For the first 14 months of her life, her diet was very limited and it was hard to fill her because her food was predominantly fruit and vegetables and her diet lacked ‘stodgy’ food. She has a fantastic appetite and loves all food that she eats, I just wish we could introduce a whole heap of new foods at once instead of the constant trialling period. She is a healthy, active, happy, funny and typical 2 year old she just takes longer to fill her diet with the same foods as everyone else.

The best news so far on our journey is that in the last few weeks (at almost 2 years of age and being extremely interested in food and what everyone else is eating) we decided to bravely let Indie trial ‘Weet-Bix’. This was to be her first multiple ingredient, packaged food and to be honest we were all really excited. Seems like such a small thing…..

The hardest part is actually allowing her only 1 teaspoon of the new food when she loves it and wants more. Imagine how mean we feel when we give her a tiny taste and then say “you can’t have anymore until tomorrow…..”! However, she has quickly progressed to having one and a half Weet-Bix every morning for breakfast (with coconut milk) and she absolutely loves it and would eat more if we let her. I can’t believe that something so common and ‘normal’ for so many kids, is a huge step for us and it opens up lots of opportunities for new and exciting foods.

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I am so passionate about raising awareness about this rare condition and I am constantly researching and talking to as many people as I can about it. If you want more information about FPIES you can head to the FPIES Website here . If you have a story to share about FPIES, I would love to hear form you. We have never actually met anyone else with an FPIES kid so it would be great to connect with others.

Thanks for taking the time to read about our journey so far. It is an ongoing journey but we are a constantly moving forward and we are well aware that we have a much more mild case than lots of other amazing FPIES families out there!! xx

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