Freya’s Story

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I’m mum to a non refluxer 15 year old son Kieran.

Decided to try for a baby with my second husband, delighted to fall pregnant very quickly. Delivered a healthy daughter, Freya, weighing a good 10lbs 9oz!. Seemingly well we left hospital after 24 hours. Rapidly discovered all was not right with darling daughter shortly after arriving home. Had no idea what was wrong as there were so many strange symptoms. She was snuffly all the time, gasped after taking just a few mouthfuls of feed, arching her back so badly I struggled to keep her on my lap. This carried on for a few weeks. In the meantime hayfever season kicked in, she snuffled so badly I researched hayfever amongst babies (which is a somewhat grey area) saw GP, rang NHS Direct, and was given nasal saline drops and told to purchase a nasal aspirator. Did this and had to do it almost constantly. This relieved her a little but was ongoing.
I used to sit up all night with her in a chair, worried so much about her rasping and struggling. Used to tell my husband to go to bed (because she is his only experience of babies and didn’t want him to worry) The defining moment came when my wonderful health visitor called for a routine visit and witnessed a rather large regurgitation. I was not unduly worried, as all babies can sometimes do this, but she said to keep an eye on this and be aware of a condition called ‘Reflux‘. The subsequent days and nights consisted of me trawling the internet to search for advice and information. It was then I came across ‘Little Refluxers’. I immediately realised Freya had every symptom bar two (recurrent ear infections and failure to thrive – but at such a good birth weight it would not have been as apparent) so we went armed with facts to GP.
Her symptoms were
Wet burps, Constant hiccups
Acid/vinegar breath/nappies
Back arching
Massive possets
Snuffling
Wind
Crying/screaming, Sore red throat
Saw sympathetic GP who prescribed Infant Gaviscon. This worked for one week initially before ceasing to control symptoms. Then in the ensuing weeks we took her to hospital where we were told to return to GP and request Omeprazole. WE were given several diagnosis of Colic, constipation, ‘virus’ etc. The virus episode particularly outraged us as it was the senior GP partner who examined Freya’s throat and ruled it was ‘as red as the cardigan I was wearing’. I asked why as she’d not been ill, and he said she’s just had a bug. I said she’d not had a temperature, and came away with Medinol. We now know this was acid damage which cried out for treatment that Medinol just wouldn’t address. We then visited GP with reflux experience who prescribed Lansoprazole instead.
That was a major turning point, but she still wasn’t right. Cried feeding, arched, fussed, drew legs up etc. It was then after several more GP appointments we started to get mad. With knowledge provided by the www.Littlerefluxers.co.uk members which pointed us towards CMPI being a factor, we requested a formula change to Neocate. This was such a battle as HV Centre Manager (not connected to our GP surgery) got involved and ordered surgery to prescribe Neocate. We went to collect and they’d prescribed Nutramigen 1 instead. My husband told the dispenser it was not suitable due to not being dairy free to which she rather uppity replied ‘it most certainly is’……….only to then check and find out it wasn’t. So there was me, breaking my heart in the surgery car park, Freya screaming in pain, husband staging a sit-in in surgery (at 5.50 on a Friday evening) until he could see a GP. Hallelujah!!! a sympathetic one saw him who said Freya should have had Neocate all along!!!. So we got it, raced to a pharmacy who luckily had one tin in.
The results were amazing!! within the first few hours she was a different baby. And that’s where we are at. That was some 14 weeks ago and we’re going great guns. The odd blip with illness etc but on the whole a happy ‘normal’ babyhood. Did try two miserable attempts at early weaning with baby rice. Packed it in and face BLW in around 3-4 weeks time. We know this may bring problems but forewarned is forearmed.
All I can say is trust YOUR instincts. This is YOUR baby after all. Don’t be afraid to keep returning to see GP/HV etc, YOU are your little ones voice after all and with the best will in the world GP’s are just that – General Practitioners who sometimes have little or no experience in the field of Reflux/CMPI.

Tracey

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About Author

Jonathan

As well as being one of the founding members of refluxSUPPORT...Jonathan is a Board Member and trustee of Living with Reflux – the only UK Charity for infants with reflux related conditions.He is also a stakeholder in the National Institute for Health and Care Excellence (NICE) – Gastro-oesophageal reflux in children and young people.He has three daughters of which the eldest is now seventeen. Two suffered from severe reflux.