At this point, it thought it might be good to pause and explain what Reflux actually is, or at least my understanding of it anyway and to relay how I believe it’s affected Dotty.
The general jist of Reflux is when the contents of the stomach flow back (or backwash) up the oesophagus through what Doctors call the LES (Lower Esophageal Sphincter). The LES is supposed to act as a sort of trapdoor (often referred to as a valve) to stop the contents flowing through and causing pain and heartburn, etc. As the milk or food flows back up, it brings some stomach acid with it, hence Acid Reflux and the discomfort it causes.
There are different types, severities and names for it but in my experience, all in all it’s an utter nightmare whatever form it takes.
Here is a handy diagram I forced my husband to make me to help bring that to life…
You might be interested to know that Reflux is quite common and almost everybody refluxes occasionally – yes, even you! We’ve all been there when we’ve eaten or drank that bit too much and grossed ourselves out with that sicky belch or wet burp that takes us by surprise as we reach for the Renee. It’s that sort of stuff.
When it comes to babies, again, most of them will experience Reflux to some extent but the majority would normally grow out of it by the time they are around 6 months old without much aggro, just a bit of spitting up after feeds or a little irritability with wind here or there.
Then there are the poor bubbas that really suffer and will have daily struggles with what would now be termed GERD or Gastroesophageal Reflux Disease, meaning it’s likely they’ll need that extra bit of help and/or medication to guide them through it.
At this point, when I’m explaining it, I always split it into 2 types of Reflux. The ‘sicky type’ and the ‘silent type.’
Thankfully, Dotty didn’t have the sicky type. And when I say sicky, I mean the violently-vomming-ALL-of-their-milk-ALL-over-everything-type that I’ve seen reduce amazing mothers to tears, fraught with worry that their little ones weren’t growing. On top of that, they are more often than not, covered in said vom and should be given badges and honours in respect of their ability to take that punishment (literally) on the chin and anywhere else it lands each day.
We have the sneaky silent type that was a little harder to spot and effectively means that the acid/fluid that flows up, then flows back down again in a sort of ‘added extra, 2 for the price of one’ kind of way. Uncalled for in my book but what do I know?!
I always struggled a bit with the symptoms of GERD as I found that the majority of chat was around ‘low weight gain’ and ‘failure to thrive’. Dot was, and still is the complete opposite. She’s a bit of a unit that’s always LOVED her milk and food. She would eat a dirty flip flop if you chopped it up and put it in one of those brightly coloured plastic kids bowls from IKEA.
She fed so much and so quickly in the beginning that I upped her milk left, right and centre thinking it was hunger that was making her so upset and irritable. She would have bouts of inconsolable crying for HOURS. I would be crying, Mark would be pacing, we’d give her more milk at which point she’s stop to feed and then as soon as she was finished, she’d scream again. As it turns out, that was making her worse. The more fluid she had in her tummy, the more it was likely to keep backwashing up and down causing what we didn’t know at the time was extreme pain. It took me a long time to let go of the guilt of essentially overfeeding her and contributing to her suffering. It still gets to me if I think about it too much so we’ll move on.
I remember reading this one sentence on one of the many websites I trawled for info in the beginning that really resonated with me. It said;
“GERD may also be diagnosed when the child is so miserable that their quality of life is significantly affected.”
Correction. It didn’t just resonate with me, it knocked the wind out of me. I mean, who wants to think that their baby is so miserable that their quality of life is being affected?? No one, that’s who. It was a statement that pulled at my insides because in our case, I knew it was true. According to her Doctors, her Reflux was so bad, it was causing her body to contort and have ‘seizures’ so of course it was true. Medication had to be the answer to help her and we were willing to try that and anything else we could to ease her pain.
Her treatment started in hospital with syringes of Domperidone and Ranitidine dispensed orally 3 times a day. We met with a Dietician to put her on new milk without cow’s protein called Nutramigen. We were told we should switch from normal formula (we were using Aptamil at the time) in case she had a cow’s milk allergy (CMA) so we were happy to give it a go. However, it’s a much thinner consistency so she had infant gaviscon in each bottle to thicken it up in an attempt to keep it down. We quickly found out that this gave her chronic constipation and so was given Lactulose to give her alongside her meds to soften things down there a bit if you catch my drift? Like the total rock star she is, she took the medication willingly without complaint each day and over time, things did get better. The ‘episodes’ reduced and she was far less upset and irritable. Things were starting to feel more manageable and after our 6th night of our second stay in hospital, I started to toy with the idea of going home and trying to start again… again!.
I feel for anyone that has Reflux and especially the parents of babies that are afflicted by it. I’ve read that it can cause such pain in extreme cases that grown adults have been known to trot themselves off to A&E thinking they’re having a heart attack. Just image what that feels like for a tiny, helpless baby, toddler or child. We were told that Dotty’s way of dealing with the pain was to twist and contort her body, going rigid and then twitching as if she were having a seizure. This became her coping mechanism and it breaks my heart to think of her experiencing such stress and discomfort from the day she was born.
Even now, at 21 months old, Dotty’s LES is STILL doing a piss poor job of stopping the backwash flow up and down and so she continues to take (albeit a slightly different combo of) meds each day. You can hear it on days when she’s especially tired or ill but thankfully it doesn’t appear to hurt anymore. She’s very prone to a cough as a result, which is hell at times and means she has an inhaler to help her out when she needs it.
We’ve managed to reduce her dosage again over the past 6 months in a bid to eventually wean her off all meds but I’d by lying if I said I’m not starting to question why she still struggles with it.
One thing I do know for certain is that REFLUX SUCKS and it’s ok to shout and scream that anytime you feel the need to. It’s not an easy thing to cope with on any level so if you are managing to muddle through, I wholeheartedly salute you.
To read the next blog chapter and continue the story click here