I have been asked many times to share our story, and I have done parts of it over the last couple of years.
Soon I will bring a more comprehensive guide to our history and our progress, and will make it available from this page.
You can use the buttons below to navigate through the different points of our story.
Published August 2015
Published January 2017
Published February 2020
Where did it all start?
Published: August 22, 2015
Our Youngest Daughter
Have you ever stopped to realise that something that has been a pretty harrowing experience in your life, was the best thing that could have ever happened to you?
That’s what this “little” story is all about.
I’m actually not really sure where to start, because while my road to discovering our family’s underlying health conditions started after the birth of our third child, there really were warning signs years before in my older children’s health, and dating back to my own childhood and beyond…
So, I’m going to start this current part to the story when our youngest was born, and with time, I’ll go back and cover the other realisations I have had since.
Her arrival has meant so much more than just the joy of another child in our family. So much more than the joy we get from seeing her growing up into a gorgeous little girl with personality plus. She’s meant that ALL of our family – within our own direct family unit, but also further afield… and many families outside of our network, have come to learn more about their health.
All from one little girl… and a somewhat determined mother I suppose too…!!
Let’s backtrack a little to October 2012. I was due with my third child… I had just completed the sale of our business of nearly 10 years, and had literally JUST finished the majority of the handover process the day before she ended up arriving.
Her siblings are twins, at the time they had just turned 6… they had significant health issues at birth (premature) plus silent reflux which caused no end of pain for our eldest (“K”) and all of us who didn’t get sleep in blocks longer than 40 minute stints until they were nearly 1. Food intolerances were found, more drugs (& different types used) and voila, reflux gone. Problems gone, right? Maybe not… but at the time we thought it!
By the time I got to the arrival of our youngest daughter “L”, I was much more armed with knowledge to push the typical “its reflux and that’s just the way it is” with her.
I had a natural delivery – VBAC too after being pressured into a c-section with the twins… so a big achievement in itself. I specifically requested no antibiotics to be given to either of us unless absolutely necessary… and it wasn’t needed – BONUS! (My research had taught me that AB’s during pregnancy and just after birth could lead to gut imbalances and reactions, so I fought hard for this).
Just minutes old… photo credit to Jen Shipston from The Heart of Motherhood
One step forward, two steps back…
Catch 22 came, when our gorgeous little 8 pound (3.6kg) munchkin arrived, she was tongue tied and didn’t feed properly, which I am sure contributed to me getting mastitis. We had the tie snipped when she was 4 days old, but the damage was already done…
By the time she was 8 days old, I was on Augmentum as I had tried every non-AB option I could in combination with guidance from my midwives. Within 24 hours, she was a screaming mess.
Worth noting here that this is what I feel to be an extremely significant (backward) step in our journey. To this point she had been fairly content and feeding ok (within the realms of expectation for a tongue-tied newborn!), sleeping “ok” as a newborn will, etc. Then she just stopped sleeping and would only do so if completely upright. Projectile vomit, horrible explosive nappies… it was never-ending. I had been used to two severe reflux babies… and handling this ONE child, was more work than they were.
By the time she was 2 weeks old, a friend suggested me looking at becoming gluten and dairy free – it had helped her with her second child a couple of months before. This seemed fairly logical as we knew the twins had reacted as babies to dairy… but I had never gone to the extent of removing it from my diet (even though they were breast and/or express milk fed, I didn’t connect the dots for it – even though I realised other foods which definitely impacted on them like onion and garlic!).
Sooooo… from that day, my world changed. Dramatically.
Have you ever seen how much gluten is used in every day foods you buy? Have a look at the labels of every single product you buy. I bet if you have a ‘standard’ Australian diet without already being restricted… foods you buy have either got dairy, or gluten, or both in them.
She did improve at least a little with this, but was still overall very refluxy and reactive.
Next step was what I had tried to avoid… reflux medications.
….step 1… Infant Gaviscon
Credit to my GP here… he wanted to try the ‘gentler’ things before the strong medications I was asking for… to help ease the symptoms while we worked out triggers. He never once suggested I wean her to formula to help. He never once tried to coerce me into doing things that I didn’t want to do with the exception of trying to slow down the heavy meds… I didn’t understand at the time, I just wanted pain relief for my baby, but, I quickly realised it was worth a try.
It did actually help at the time to ease the symptoms, especially while she was probably in withdrawals, as was I no doubt too. Not thinking straight. After a month of varying uses of it and regularity of doses, etc… plus gradually taking out obvious triggers from my diet that came along… it was time for the ‘big guns’.
….step 2…. Losec (Omeprazole)
This medication actively reduces the amount of stomach acid which is going to burn and hurt in an individual with reflux. It makes a difference in pain and is used so commonly in children and adults alike. They are called “proton pump inhibitors” (PPI).
By reducing the amount of acid in the stomach, it also means that food particles may not be broken down into the smallest unit they can, and then if gut damage exists (which clearly in L it did, and many other babies with reflux it does too)…… these larger molecules can then go into their blood stream and put a massive strain on their bodies to break them down where they shouldn’t normally need to.
It also has serious impacts on health when used long-term, but these parts don’t get talked about. Mineral deficiencies they cause…. making food intolerances worse… yep… awesome. These parts were never discussed more than a glean… by multiple physicians. More about that later.
….step 3…. Zoton (Lansoprazole)
For some reason, the way my kids responded to the PPI drugs wasn’t “normal”… they didn’t actually get much relief from Losec, it helped a little, but didn’t solve a lot long-term. All of them ended up on Zoton and that’s where the changes in behaviour happened at least… pain relief… rest… recovery… (and some more mineral deficiencies).
This is the medication that helped us to find baseline with more significant diet changes… this is what let us see the huge amount of inflammation that was happening in L’s body… but its also what probably contributed to a longer recovery.
Luckily when she was about 8 months old, once I had gone through very extensive dietary changes beyond the dairy and gluten, a single pharmacist clued me up to the magnesium deficiency that would be created by her ADULT doses of this drug. A tiny little baby, borderline failure to thrive… and she was barely kept “maintained” reflux wise on something which actively pumps magnesium out of the body’s stores.
As quickly as I humanly could, we dropped the medication. Weathered the withdrawal symptoms (everything gets worse for a bit!) and found she was remarkably happy off them, but using the gaviscon again to manage symptoms of flares. At the same time, or soon after, we introduced magnesium via epsom salts, and via transdermal magnesium for me…. and that then led to a whole different path.
So beyond the gluten and dairy, then medication… what did I do to help her?
The Journey Continues…
Published: January 13, 2017
My story starts 4 years ago when my third baby was born. I had twins 6 years before who I also breastfed, so I was very familiar with many challenges in this area, and to being creative with coping… how to juggle babies, but it was a different story with this baby, she was a massive challenge!
She was so sensitive to foods that me eating a couple of strawberries could have her projectile vomiting for hours, and the lingering affects for weeks.
March 2013 – you wouldn’t know what we lived through day to day here!
Eosinophilic Oesophagitis (EoE)
I had gone through various specialists and testing, she had been given a diagnosis of likely eosinophilic oesophagitis (EoE), multiple food protein intolerances and possibly FPIES. Much of this by 6 months old.
She and I were on about 15 foods from somewhere around 4-5 months old until 18 months, so as many will understand, she was super sensitive!!
I started to realise that there must be SOMETHING that we can do to help her gain foods. I started to read on the ‘beyond failsafe’ Facebook group about how to improve. Minerals really resonated with me too as I have an animal science biology qualification and keen interest in biology and science in general.
At around this time – when she was about 8 months old, a pharmacist asked me what we were doing for her magnesium levels – then going on to me that the adult dose of reflux medication she was on would be causing a magnesium deficiency….many doctors across three severely refluxy children and NONE told me this! It’s a known function of the medications ?
Once I started to switch on to magnesium deficiency, researching more and more, I ended up in the Magnesium Advocacy Group care of a friend, and started to add mag ever so slowly to my regular routine.
It all began when she was around 10 months old, with just 4 sprays of magnesium oil at first per day. Then a week in, I went up to 6, and then to 8 another week later.
At this point the most mag I gave directly to her was to give her some Epsom salt (ES) baths. She had been a baby who preferred to be showered so she rarely had a way to give her ES baths anyway before we made the effort to swap it in.
When I was on 8 sprays/day, she started sleeping through at night and longer in the day too. She used to wake hourly or more anywhere starting from 10pm to 1am – depending on what I had eaten!
I couldn’t believe it! Is it the mag? No couldn’t be!!
By the time she had her first birthday, I had introduced egg directly to her (yet at 6 months old, indirect exposure via me caused screaming for days)…! I couldn’t believe it.
I continued to raise the number of sprays, and she became more and more stable just with that extra mag indirectly via me.
A couple of months in, I traveled and got out of routine. I didn’t think it would matter that much to stop the mag. She turned right back where she was! Screaming, feeding throughout the night obviously due to pain. Sooo much worse.
It took me a few days at home again to connect the dots, so a few days after we got home, I started again. Within 24h she was sleeping again and settled!!
After 6 months of adding magnesium slowly, I had introduced oral mag plus the topical, and I felt so much better in me too! I could get away with trying other foods at work events, and she wouldn’t react as badly or for as long.
I booked in for a consult with Morley Robbins (from therootcauseprotocol.com) about this time, and suddenly what we were seeing plus what I had been experiencing throughout my life in my own food reactions (migraines!), made sense.
My Mum and Nan both showed signs of magnesium deficiency throughout their lives….plus what I’ve since learned to be further mineral imbalances as the mag is really a symptom of bigger things….so by the time I was born as the third child, then had twins myself, an ectopic pregnancy that nearly killed me and less than a year later, I was pregnant again with my super reactive child….it’s not really a surprise I didn’t have a lot minerals-wise to give her!!
At that point I set to start implementing Morley’s recommendations.
I added extra potassium and sodium to support my tanked out adrenal system….these are important to your body during flight or fight responses – mine had tanked after yeaaaars of being under perpetual stress.
I used digestive enzymes to help, added lemon juice to make the recommended adrenal cocktail drink (oranges were a trigger of migraines in me, had been for years!)….plus the fear of something so naturally high in chemicals was petrifying! But I felt the challenge was needed.
Step by step I added things. Step by step we felt better and saw changes in development and health.
I had another consult and Morley recommended again adding whole food vitamin c – it was a huge thing to contemplate to me at that point still, soooo much chance for big reactions from all the unknown natural chemicals in a pill! It took until later to realise that metabolically, reactive kids like her NEED to have these foods in order to recover.
I was so terrified of the implications of adding things like whole food vitamin c, yet when we did it, it was a non event reactions wise, and turned into the best way for us to get another step in improvements!
Along the way we had her tested – we had started with my (older) son and me and just implemented across the board where it seemed we could.
When my littlest one was 24 months old, she just barely weighed 11kg.
We built up to her doing everything Morley recommended by her second birthday….at 25 months old, she was 11.5kg!!
It has continued for us and now at just over 4 (posted Jan 2017), she has well over 50 safe foods, we can talk about what foods she can’t have easier than what she can (!!)….she’s developing normally and is on no drugs. So many kids with her diagnosis (“eosinophilic oesophagitis”) end up on elemental formula, steroids, ending up also with other autoimmune conditions including eczema, asthma, chronic sickness….
This 4 year old in her natural environment…Elsa dresses and stickers!
Her reactions when she has them now are nothing like what they were, and it’s such a different path to where we were!
Her siblings are now 10 and have seen similar results – no asthma (it was severe!), eczema, constant colds in winter.
They eat pretty much anything except gluten without issue, though we all avoid eating additives. We eat tomatoes, watermelons, mangoes, herbs, spices.
Something else to consider – we were basically on one income throughout this period of discovery. I was made redundant from my job during 2013…so the cost of testing and supplements was something that I feared terribly.
Instead of spending $1000’s on Drs visits, eczema, asthma and reflux medication for just the kids, we now eat whole food, use limited supplements and see Drs to get blood test checks only…we don’t get sick like we all did (& we weren’t super sickly in the scheme of things!). We have saved thousands by having taken a leap of faith to go down this path.
This is a snippet of the changes for us…most of it since January 2014, but mag started ~August 2013.
Beyond the last update, what’s changed?
Published: February 27, 2020
We are now suddenly in 2020, and since these previous updates have been written our wildest dreams have come true with our youngest, but also with our whole family.
A more detailed update will be added here, but a summary of the highlights and where we are at now includes the following:
- In mid 2016, we travelled to America from our home in Brisbane, to visit family. At this stage our youngest was nearing 4, and she ate so many foods she had never eaten before, and she had almost no reactions. We continued to liberate her diet a lot faster after that time.
- She started school in 2018 with only 30-40 foods we were careful about (which is the reverse of the 40-50 foods we were told she may have as ‘safe’ options upon starting school.
- As of most of 2019 and now in 2020, she only avoids gluten – we have had some preliminary testing done suggesting she’s likely a coeliac, and without wanting to put her through the challenge and pain of further testing, we treat her as if she was one. Pretty much any whole foods are included in her diet – none excluded due to reactions at any rate.
- We can go out as a family and find gluten free food, and enjoy our times together now – there’s no need to be hyper vigilant and ready to deal with reactions
- If she does have a reaction to something (often things like bug bites, or things in the environment), it’s gone within a short time and is a small blip in the scheme of life. Her resilience is high when exposed to external triggers.
- She’s grown to be a typical height for her age, developmentally is where she should be and is doing great at school (now Grade 2 in 2020).
- She’s had zero medications that we were told she would “have” to have for managing the Eosinophilic Oesophagitis. None. She has not had symptoms for years now and the issues that plagued us when younger, have never returned, only improved.
- She’s never needed any of the invasive treatments or investigations as a result – that is what is “typical” with her level of reactivity as a baby and toddler, but wasn’t needed.
- When she had an accident and broke her arm at school in 2019, the hospital staff were somewhat confused by my ‘she won’t know what that is’ with regards to Nurofen (ibuprofen) and Panadol (paracetamol/Tylenol)… we rarely need any pain killers and she’s not needed them. She was pretty determined not to have them too! It was more distressing to get her to have these medications, than the benefit she would have had… she ended up vomiting up the drugs anyway and they admitted her for observation instead of forcing more. She was fine and we left hospital the next morning with no more medications on board (& not needed).
- Bedwetting has gone from our house (from L and one of her siblings).
- We don’t get sick more than a slight sniffle even when everyone around us at school or work is sick. (2021 added note: this has been for many years now, even with kids in varying levels of school, my husband working in an industry with large exposure to other people and where his work colleagues often are sick, he/we don’t come down with almost any of it!).
- The rest of our family have seen massive changes to our own health during that time too – I no longer get migraines, I’m no longer sun sensitive, I don’t get dizziness, vertigo and the like, my older kids (twins, as of early 2020, 13 years old) no longer have frequent (very severe) blood noses, no asthma, eczema, also eating all the food groups without reaction.
We have had such a phenomenal change to how we cope with stress, our resilience is so much more improved, and even when we have a lot of things not go to plan, or we get a bit over-scheduled (which everyone does at some stage!!), we are able to get on with it. In the past we would have ended up sick, completely overwhelmed and I would often end up with a forced break via a migraine or just feeling unwell.
Despite increasing pressure of school for the teens, they can cope with it and not hit the high anxiety levels that the majority of their friends end up with… and the same goes for hubby and I in our respective jobs… it’s definitely not ‘sunshine and lollipops’ all the time for us, but when the heat gets turned up, we have the capacity to deal with it and not melt!
If you would like to get support to find your own pathway like this, get in touch!