Living and coping with a reflux baby

My son, William, was diagnosed at 7 months with Sandifers Syndrome, a type of reflux that causes seizures.  I didn’t see the usual warning sign of projectile vomiting, instead he started refusing breast milk and purées, he stopped gaining weight and even started to lose some.  He would get what I thought was angry and arch his body so that his head would touch his heels.  He stopped sleeping the night through and his day sleeps were shorter and disturbed.

Sleeping upright after feeding
All snuggly in his Merino Kids Duvet Go Go Bag

It was tough.  Being judged by others for what they saw as "spoiling him", being told to just let him scream he will sleep eventually, being told not to be so dramatic and to loosen up, being told that he was too old for reflux, I felt powerless not being able to do anything to stop his pain and to top it all off we all suffered from sleep deprivation.

One afternoon I got William out of bed and put him on the floor in our lounge room while I tended to the fire, within moments he had stopped screaming, I turned around to find that he had turned blue and stopped breathing, his eyes were wild.  I did everything I had been taught in first aid, and thankfully he started breathing again.

After four days and three long nights in hospital we had a diagnosis, medication and were sent home.  We were told that reflux was caused by a weak valve allowing stomach acid into the oesophagus.  They told us William had stopped breathing because of a laryngospasm (his body was protecting his lungs from inhaling the stomach acid), and it wasn’t likely to happen again with his medication and even if it did, he would almost certainly start breathing again. They also told us the back arching wasn’t due to bad behaviour but were in fact seizures (the worst they had seen in a Sandifers Syndrome sufferer).

Our life changed.  A daily dose of infant antacid relieved his reflux symptoms but also caused constipation, so we would dose him with a laxative twice daily. A friend whose son suffers from reflux wasn’t given advice to give laxatives and her son now has problems with a weak rectum which is expected to take years to resolve.  William still refused solids so he became anaemic, which meant that we had to given him an iron supplement daily - a side effect of which is constipation, so we had to up the dose of the laxative.

We were lucky, our chemist compounded a liquid form of the antacid prescribed, I have read in support group forums that most parents have to crush tablets and feed a home emulsion to their children which is tricky with a bitter medicine.

Rebecca and a happy healthy William :)

Along with the medication we had to find ways to lessen the effect of the reflux, so I breastfed him upright straddling my knee and kept him quiet and upright for half an hour after feeds (not in a bouncer), raised the head end of his bed, monitored his belly and back floor play time, and cut acidic and spicy foods out of both of our diets (such as tomato, orange and apple).

We had regular check ups with the doctor to monitor the dosage of antacid and his development.  Amid my reading about reflux sufferers, I have found that they are more likely to have food allergies, and sure enough my son is allergic to cinnamon and tomato.

Thankfully he has never stopped breathing again and at 12 months old he had “grown out of it”.  William is now a happy and healthy medication free 19 month old.

Xo Rebecca

Author Bio - Rebecca - a 34 year old stay at home Mum to a 1 year old boy, William. My husband is a farmer and we live in a farmhouse on the family farm. Currently we are hoping for child number two. Before family life I was a laboratory technician, working in plant and animal disease diagnostics.

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