Saturday, February 2, 2013

Reflux hell

From day one at home, Ethan was never what you would refer to as a settled baby and sleep was a struggle always. While he would happily sleep in anyone's arms or on Scott and my chest, lay him down on his back (as per SIDS guidelines) and his eyes would instantly fly open accompanied by screaming and tears following until he was pick back up and put to the breast.

A voracious yet ridiculously fast feeder, it seemed Ethan was always needing to nurse and was very vocal about his need to. My mum queried whether he was getting enough milk and crying from hunger but No matter what I did from wet face clothes to stripping him to playing with his feet to tickling his chin, when he was done he could not be coaxed to feed more... Even if the feed had lasted just a few minutes on only one side. But lay him down no matter how out to it he was and he would wake up every single time.

Concerned I visited a lactation consultant who weighed Ethan and then observed us feeding. She reassured me that our feeding was perfect and his weight indicated he was thriving. I was reassured to know it wasn't me but still frustrated, confused and utterly sleep deprived.

To say the early nights were hard was a massive understatement. I sat up in the cold (it was the middle of winter) in our lounge room trying desperately to get Ethan to feed enough to have a few hours sleep. More often than not, the nights played out with me getting a few hours while Scott held him then me up from midnight to 5am feeding and holding a baby that would not settle.

We thought his inability to sleep could be related to the cold temperatures of our home and installed a heater to our room. Nothing changed. A few people suggested he was just colicky and to spend longer burping him, watching what I ate and that he would grow out if it. I spent hours trying to pat and burp etc but the screaming continued and the only way to settle him was to put him to the breast. Everyone around me agreed he was a windy baby and at 6 weeks I was told to use infants friend - a remedy to help babies release wind.

By 5/6 weeks, we were experiencing screaming episodes that would go on at anytime of the day or night continuously unless he was being held or fed. We were existing on just a few hours sleep a day and night and it was taking its toll. I was constantly worried I was failing my baby somehow and Scott felt helpless that he couldn't do more to give me rest or settle Ethan. I shed lots of tears in the shower and spent as much time out and about as possible because everything seemed easier away from home.

At his 6/8 week needles, I spoke to our GP (a specialist in child health) about the episodes for want of a better word and he told me it sounded like Ethan was colicky. He gave me some literature on the subject and told me to use bathes and infant massage in addition to infants friend as a soother and the unsettledness would pass eventually.

Over the weeks I tried everything from burping to propping up the bassinet to natural remedies, massage and everything in between but nothing changed. I started to have my suspicions but quashed them rather than acknowledge - it seemed easier and a lot less scary. I asked a few people including the GP if I should see a paed but all told me it was a growing stage and would pass.

It was the middle of winter,cold and rainy and i was just exhausted. Out shopping one afternoon I called into Toys R Us and was browsing the baby items. It was then I spied the Fisher Price rock n play. Like an upright hammock type rocker, it suggested it could be used for sleep and better yet, it was half price. I was desperate to try anything by that point and figured it couldn't do any harm seeing as the bassinet wasn't creating much of a sleep environment.

That first stretch in it, Ethan slept five hours straight for the first time ever! Scott and I were in shock... And also a little better rested. His sleeps improved but were still very patchy and the round the clock feeding hadn't stopped. He was also having the most horrific screaming episodes that were getting worse and lasted hours. He couldn't be soothed or comforted at all. He would arch his little body and scream till he had energy left but to sob with tears streaming and we couldn't do a thing but hold him, rock him, cuddle him and tell him over and over how much we loved him. Many a day I spent hours sitting on my bed with tears streaming holding him while he screamed, helpless to do anything.

I began to suspect Ethan had silent / acid reflux. My best friends daughter exhibited the same symptoms from birth and was diagnosed at about 3/3.5 months with it. having spent a lot of time at her house helping her through the hell of it, I was well able to recognise the signs and had suspected it from early on but was brushed off with all the other suggestions and most of all, that I was a first time mum and it was unlikely.

I took Ethan to another child health GP and suggested reflux. He told me it was an infant thing to cry, that he was colicky and I may be overreacting slightly as a first time mother.

I headed back to work 4 days a week when Ethan was 4 months old and left him in the care of his grandmothers. It was a kind of break from the exhausting and draining days at home where I was getting no sleep at night and none during the day due to a steady stream of visitors. Unfortunately there was still no resolution or treatment and things got steadily worse. On a bad day, Ethan would scream the entire day, exhausting himself to sleep before waking again to repeat. On a good day, he would only scream for half of the day.

When Ethan wasn't in pain, he was the happiest most responsive baby and it was beyond heartbreaking to see the pain he was clearly in.

I would often get a call from my mother letting me know he was having a bad day and my mother in law was in tears too. I would spend my day at work worrying, crying privately and dreading going home to go through it all again then feeling guilty for thinking that way as I truly couldn't wait to get home to see Ethan.

My mum spent hours researching what could possibly be the matter and one week it was lactose intolerance, another week it was something else. I broke down after a few weeks and begged her to tell me what to do: stop bf, cut out all dairy and wheat... Should I take him to a paediatrician? She agreed it was probably a good idea by this point to have Ethan checked over thoroughly. Relieved I had something constructive to do, I set about getting an appointment with one my mother recommended. I called to make the appointment praying for one sooner than later. I spoke to the lovely receptionist there, starting to give her a history and next thing I was sobbing my heart out. She let me go then calmed me and slotted me in for the end of the same week.

I made all sorts of notes and headed along to our appointment. A older paed, Dr Price was a nonsense to the point doctor who didn't appreciate interruptions but was amazingly kind and gentle with Ethan. He took a history, asked a lot of questions, checked Ethan over thoroughly and then said 'well, it would appear Ethan has pathological reflux.' Holding back tears, I nodded and he asked me to please watch the following power point and hold all questions till it was over.

The power point was simple and concise, describing the condition, how it happens, symptoms etc and had some video clips of children having episodes - it was Ethan to a tee. Dr price recommended continuing Ethan on breast milk but also starting him on solids that day with a view to getting him up to 3 meals a day as soon as possible. He also prescribed the use of adult gaviscon before a bf and adult mylanta following a bf in small doses. We made a follow up appointment for four weeks time.

I burst into tears in the car park and my mother just hugged me. I told her how relieved I was to know what was wrong but also how upset and frustrated I was that no one had listened to me earlier, writing me off as an overreacting first time mother.

We started Ethan on rice cereal that same night and he loved it, instinctively opening his mouth for the spoon. Expecting only a teaspoon or two to be swallowed, Ethan surprised us by eating the two tablespoon serve entirely without fuss. He took the gaviscon and mylanta solutions well and we hoped for the best.

Over the coming weeks, Ethan ate everything we fed him with gusto and we saw an improvement but not completely. His pained episodes were further apart but still regular so we went back to Dr Price with the summary. Dr Price didn't seem surprised that the course of action hadn't been entirely successful and told us he had suspected Ethan's reflux may be too severe for such a mild treatment but that he always tried the mild treatment before medication.

Ethan was prescribed an anti reflux medication just before Christmas to reduce the acid levels in his stomach. The fun part, the medication only came as tablet form and Ethan only needed half a tablet so we had a lot of fun cutting, crushing, dissolving and then droppering to get it into Ethan until a girlfriend suggested seeing a compounding chemist. There is quite a big one that just opened near my work and thankfully they were able to prepare a suspension that makes it so much easier.

Ethan is now on 3 meals plus snacks and is still bf or given ebm at 7.5 months. His reflux is still quite severe with us avoiding dairy, tomatoes etc from his diet even now. We try a small amount every so often but in the past week alone, a teaspoon of yoghurt caused a reflux pain and the following day he was mistakenly given a meal containing tomato purée that had us up all night. We also notice the reflux becomes noticeably worse or flares up when Ethan is teething and when the weather turns hot and humid.

Acid Reflux really is hell... Especially for the poor baby suffering it. It's not much better for the parents though because you are utterly helpless to do anything but perpetuate the cycle until its diagnosed. Ethan has always been a great albeit constant feeder, put on a steady amount of weight and apart from the pained episodes, is a happy outgoing baby so it's very hard to pinpoint and diagnose what could be wrong. The constant feeding is where the vicious cycle exists however - a baby with this form of reflux will feed, experience the burn then want to feed again to stop or soothe the burn and on it goes.

My best advice, if you suspect your baby has pathological reflux, see a paed! Don't let anyone tell you you are overreacting... Listen to your instincts. And buy a fisher price rock n play for bedtime. Ethan slept in his till just under 6 months as the upright positioning was and is key to managing reflux.

4 comments:

  1. That's a brilliant post.
    Not brilliant because you went through it but brilliant because you have been so so honest and opened up like that.
    What others will gain from this post could be HUGE!

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  2. Thank you so much for posting this! I actually think my daughter had a form of reflux. But I too was turned away as a first time mum, I was upset and must of looked a sight from lack of sleep!
    I started her on solids early and didn't look back!

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  3. Thanks Sammie. I decided to post it for exactly that reason... I hope that my story will find its way to other mothers so that can know they are not alone. xx

    Leah, I'm so sorry to hear you went through that too without support and acknowledgement. Well done to you for coming through the other side. xx

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  4. This was so hard to read, and I don't have children yet!
    Sorry that you and yours have experienced such a difficult, horrible thing. Hoping everything is better every day.

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