That inevitable question – ‘do you think he still needs reflux medication?’
**Always seek a doctors advice before weaning off medication. Reducing meds MUST be done in a controlled manner with a doctors supervision and a proper plan in place. It took us 3 months just to swap from one reflux drug to another just because we had to wean them over. Sometimes cold turkey works but some meds do not work like that. A good month with no reflux symptoms doesn’t always mean they don’t need the medication any more. It might be as simple as the medications are doing their job! **
We had an annual paediatrician appointment this month. A general review of all things Dexter. Including his reflux. During the conversation we were asked ‘so, do you think he still needs the Omeprazole?’ My knee jerk reaction was of course he still needs his meds! Why on earth would I stop them when they are clearly working! He’s only just got his symptoms under control since he started the Omeprazole about 6 months ago. Who would be foolish enough to stop it?!
But then it got me thinking. How DO we know if he needs it any more? How can we tell the difference between a successful treatment controlling his symptoms or a reduction in symptoms requiring less treatment? At what point do we say ‘let’s give it a go without his meds today’. Then my head started to spin. So I did some research.
The only way to know for sure if someone still needs their reflux meds is to stop them. Some people get to a point where the drug is working and after a few months of no episodes try weaning them off it. For some it will work but for others there will be some acid rebound – a sudden increase in acid as the body tries to get its levels back to normal without the aid of drugs. It doesn’t mean the weaning hasn’t worked. Just that the body is trying to reset itself without the aid of medication. It’s if this doesn’t settle down that you know it’s not working. We have only ever weaned off a reflux medication once and that was when stopping one drug and starting another. Even with the new drug Dexter still experienced acid rebound from reducing the old one even though it was pretty ineffective at controlling his symptoms.
So how could we tell if he was ready? It’s hard to tell with any child but even more so with a child who is non verbal. Dexter can’t tell us if he is in pain or feels sick. We have spent the last 3 years learning his ‘tells’. It’s like playing poker. He has little expressions and signs for when the reflux is playing up.
Firstly we paid close attention to these habits that we have long since accepted as normal. The excessive swallowing first thing in a morning. The acid burps he does after a drink. Sleeping sat up to stop acid rising in his throat during the night. Pulling his knees up to his tummy when he’s uncomfortable.
At first everything seemed to be looking OK. There were a few signs the reflux was still there but nothing near as severe as before his medications were changed and he finally started to get control. Then about a week in we had a code red. A code red in our house is a reflux induced vomit that usually requires a change of clothes for Dexter, a change of clothes for me, a bath for us both and a good clean and disinfect of the surrounding areas. Code reds can be caused by anything from a bit of a cold or a bug irritating his tummy, to just one of those random events with no obvious reason.
This in turn leads to a night alternating between snoring and tummy pain usually ending with Calpol and the hope it was a one off. If ever we needed confirmation of how much he still needs his meds this was it. It took him 2 days to recover from the code red. He had bad tummy pain, a fever and hardly ate until his stomach lining had settled down and become less inflamed.
We didn’t need any more evidence or signs to confirm what we already knew. He undoubtedly still needs his medication. Unfortunately for as much as he needs and relies on his meds the reflux still finds a way to sneak in sometimes. A flare up here. A bad night there. It’s currently managed with his meds for the main part. I dread to think how bad he’d be without them.
So this is a note to you Mr Paediatrician. I know the aim is to eventually let him grow out of it and end up drug free. In the meantime I will keep an eye on his symptoms. See how long he goes between episodes and how many code reds we get before the next review. For now however, it’s clear his meds (and reflux) will stay in our lives for a little while yet.