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).
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?
That’s for another day… please check by and I’ll link to the next post soon.