So I was falsely led to believe that this month is “GERD awareness month”…apparently it’s not and it’s actually in November.
But you know what?
Every single day is GERD awareness day in our house so regardless of awareness day I am writing a piece about it.
Forgive my terrible pun in the title – if you can’t laugh – you cry.
Nothing has made me feel more hopeless as a mother or reduced me to frustrated tears as much as this evil little diagnosis.
For those of you who are lucky enough to not know what GERD is, let me give you a little introduction.
GERD (or gastroesophegal reflux disease) is basically severe and chronic reflux.
Heartburn/acid indigestion is a painful burning sensation (one I remember well from pregnancy).
Some people will experience regurgitation, dyspepsia (discomfort/burning in the upper middle part of the stomach), dysphagia (difficulty in swallowing), a sore throat, a dry cough, asthma symptoms.
My daughter Amy-Rose has suffered with GERD since birth and it is responsible for every single hospital admission and surgery she has encountered in her little life so far.
It affects our daily life in such a multitude of ways it is actually quite difficult to put into words!
There are days it has been so bad that Phil and I have taken it in turns to try and calm Amy in 15 minute segments.
There have been times where her crying and pain has been so bad I have phoned my health visitor crying my eyes out because I didn’t know where else to turn.
There have been times where the only thing distracting her from her pain is to stroll the streets constantly with her in her pram (the motion seems to calm her) and heaven forbid you should stop or enter a shop!
Amy is 100% gastrostomy tube fed, she has always been tube fed.
Her reflux comes as part of the cerebral palsy wonder package.
It was an agonising decision – one no parent takes lightly.
I was assured that getting a fundoplication (stops reflux) at the same time would be a one time fix and that we would wish we’d had the surgery done sooner.
It was true – overnight our screaming little girl turned into this focused, happy, relaxed little ray of sunshine.
We were given the daft advice to stop all of her meds as she no longer needed them…we were a little confused as to why we weren’t at least weaning slowly off them but hey they’re the professionals not us… so we took their advice…
So we began pump feeds of formula through the gastrostomy and soon learned that it was a challenge for Amy to tolerate such a volume of constant food going in, regardless of the rate it was pumped in.
She would retch to the point of choking at which point we would stop the feed to vent her tube.
It was so frustrating.
I started to panic when I realised she was underweight for her height and swiftly started researching a blended diet.
Our blended diet plans were not immediately met with approval by our dietician who urged us to try milk thickener first to see if it would work.
The dietician felt that the thickener should now be fine thanks to the fundo – this was not the case.
Amy projectile vomited and burst her fundo.
Our happy little girl progressively got more and more distressed as her reflux symptoms started to make an ugly reappearance. (Note: I do not blame our dietician for what happened – she is incredibly helpful and understanding, we weren’t to know what would happen)
Our dietician was on board and we struggled through each day phoning and begging for a surgical consult or some sort of help with the reflux.
Eventually we had the consultation and the options were either a fundoplication redo (which I am not keen on as it could fail again) or an OGD (basically separating the oesophagus from the stomach completely – it’s more complex than that but that’s an easy explanation!).
So no decision was made on the day, the OGD idea terrifies me.
Where do we stand at the moment?
Well, we just had a 3 day admission to hospital where our paediatrician was very shocked to see Amy’s distress as were the specialists who attended our latest TAC meeting.
Meds were changed, doses were changed and pump feeds were re-introduced but with a different formula.
We are back on the blended diet and a mix of pump feeds of our old formula until we can trial a different kind of formula that works or something.
I refer to the pump as “the unwelcome Mr Abbott”, he beeps at me at the time, he is temperamental, he is unbalanced and he takes up a huge portion of our time!
Today I learned that one reason Amy’s blended feeds are upsetting her is that the fatty foods such as avocados are harder to digest and aggravate her reflux further.
It really is absolutely soul destroying and emotionally draining.
There is nothing tougher than watching your child scream in pain when you’ve done every possible thing in the list to help!
Another issue we face is that people say things like “ah yes my son had reflux but it went away after a while”… NO!
GERD is something that affects every single part of our lives right now.
It’s great people relate to the problems we are going through but cerebral palsy is to blame, unfortunately.
I wish it would just go away after a year or so!
We are awaiting an ultrasound, a ph study and various other tests to ascertain what the next move should be to tackle this issue.
I wish I had a crystal ball – I wish I could see where we will be in a year’s time – will she have had an OGD?
Will we find a feeding regime that works and no action needs to be taken?
I am sure you can ascertain from my description that GERD is NOT pleasant… anyone who has experienced reflux will admit to feeling lousy and GERD is next level.
So much as I have chosen to raise awareness at the non-designated time of year – I hope you can empathise and understand our predicament and find a new found respect for those who battle with GERD everyday.
We are never giving up hope and know the solution is out there, it just hasn’t found us yet.
Do you use poppered vests or bodysuits?