Felix’s Story

Felix’s Story

It might help to read Ashton’s story first, to help add some context.

Felix was born when Ashton was 3. By this time, we were well aware that we might be dealing with round two of allergies, food sensitivities, colic, reflux and tongue ties. After what I’d learned from Ashton, there is one thing I had my heart set on – and that was breastfeeding. The perfect food for a sensitive babies gut, recommended to help heal the gut, highly recommended in babies who are a risk of developing allergies and eczema. I said, if he had reflux – easy – I’d just cut dairy from my diet.

Felix well and truly fulfilled our expectations, he started exhibiting symptoms of tongue tie, allergy, colic and reflux from the day he was born! At 2 weeks old I eliminated dairy and soy from my diet, this helped slightly with his rashes and horrific green nappies. He still screamed inconsolably every night for 5 – 8 hours. Nothing you could do would stop him. We resorted to wearing ear phones and playing music while we took turns at walking his tense, screaming body around our dark bedroom. He would then pass out, exhausted, for 6 hours, then wake early hours of the morning writhing and screaming in pain again.

By the time he was 4 weeks old I had eliminated dairy, eggs, nuts, soy and wheat from my diet – but he was still having long and painful screaming fits, silent reflux, pain during feeding, the most horrific green, mucousy, frothy stools, with blood, and failure to thrive. Out of desperation I started an elimination diet – I ate nothing but pumpkin, carrot, lamb, rice, kumara and bok choi for four weeks. Possibly the most miserable 4 weeks of my life! But he started improving. He would still have the occasional strange poo, rash or screaming fit, but incredibly the reflux, colic, rashes, blood and mucous all disappeared!

Then became the painful process of trying to introduce new foods back into my diet to see what he reacted to. First I tried oats – I was desperate for a decent breakfast – even if I had no milk to put on them! Within half an hour he broke out in a full body rash, vomited, and screamed for 3 days straight. Next I tried avocado and coconut which thankfully seemed ok. Then came fail after fail – I couldn’t even eat one single cashew nut without him reacting. He reacted to dairy, soy, wheat, beef, lamb, pears, apples, banana, chia seeds, cocoa, all nuts and eggs – to name a few.

Once we saw a pediatrician he very promptly said the issues were beyond him and referred us to a specialist in Wellington. By this time Felix was about 7 months old – I had settled on a diet of chicken, fish, rice, avocado, olive oil, coconut, chamomile tea and a few selected veges. I had also lost 25Kg in just a few months! Anything else I ate gave him a reaction – sometimes it was just unsettled sleep, other times it was blood in his stools. He has also reacted to kumara and pumpkin when I tried to feed him solids, but he was thriving on my breastmilk.

When Felix was 8 months old we finally saw the specialist in Wellington, he diagnosed Felix with FPIES (Food Protein Induced Enterocolitis Syndrome). Which is a childhood allergy that presents in the gut, rather than causing swelling or breathing difficulties.  Certain foods cause vomiting, sometimes until they go into shock. It can also present as sensitivities to foods that cause ‘chronic’ reactions. This is what Felix has; the chronic reactions eventually cause malnourishment and failure to thrive, due to the constant damaged state of the gut. For all it was worth, he also diagnosed Ashton, (my suspicions were correct!) who presented with chronic symptoms at first, then the vomiting I described in his story, later. The specialist was quite happy with Felix’s progress, and said I could continue breastfeeding him for as long as I was happy to have such a limited diet [and also referred me to a dietitian – such a restrictive diet is not recommended without professional advice].

When Felix was 10 months old he was no longer doing so well, he had not grown since our visit to the specialist, even though he was feeding every hour around the clock. I was still unable to introduce any new food to my diet and everything I tried to feed him he reacted to. I had enough of being hungry all the time and it was really hard to maintain my body weight, while breastfeeding, on such a limited diet, and while running around after 2 kids and trying to work! So I made the decision to finish feeding him and switch to an elemental formula. Well, that didn’t go so well and he had to be admitted to hospital and have a nasogastric feeding tube put in because after weeks of coaxing he refused to drink the formula! Luckily we had him weaned off the tube and drinking a bottle in a few short weeks.

At felix’s first birthday he had only 4 safe foods he could eat: carrot, avocado, parsnip and pears. At his birthday party I only served these foods so I knew he could join in and be safe. He would react to even a crumb off the floor so it was important we didn’t have to worry on his special day.

Having such a limited diet for so long really opened my eyes to what is in our food. I pretty much couldn’t have anything that came in a packet, the things with safe ingredients had all sorts of preservatives, chemicals and inflammatory vegetable oils. I once again refined and overhauled the whole family’s diet, trying to ensure we were mostly eating foods that could nourish our bodies from the inside out. I probably should have been morbidly depressed with such a needy baby, lack of sleep and not able to eat anything (which is pretty depressing in social situations). But I had never felt happier, yes, some days were hard, but for the most part I woke every morning energized, happy and ready to take on the world. I felt like a fog in my brain had been lifted and my body felt light and rejuvenated. I put it down to having such a clean diet.

The next step was about trying to healing his poor, damaged little gut. Our first great pass was beef! Once he got some meat in him he starting walking and talking! We were able to introduce beef bone broth and some gut healing beef gelatin. We have pretty much been on the home straight since then and he has about 20 foods he can eat with the list growing every week. His progress in such a short amount of time has been nothing short of astounding and I put it down to how careful and selective we have been with his diet, choosing only foods that will give some sort of benefit to his gut and body. And avoiding anything that might be a source of inflammation or hard to digest. He is currently avoiding all nuts, eggs, seeds, dairy, soy, wheat, legumes, nightshades and grains.

I have chosen to continue to avoid eating wheat, dairy, highly processed vegetable oils and packaged foods as well as refined sugar, as they don’t make my body feel good. Most of the cooking I do for my family is free of these things too (especially for the children and their allergies) and I am inspired to share my food with anyone who is keen to make a change. If you want to follow Felix’s progress and how we prepare food for him you can find us on Chef Ashton’s facebook page.