Life as a mummy of a silent reflux and cows milk protein allergy baby

So I have been putting off writing this blog for months now, as I have tried to block those painful months out of my memory.
Matilda was three weeks old when she started showing signs of silent reflux, one day she just started screaming and wouldn’t stop until she was sleeping.
At this point I was exclusively breastfeeding, for the first three weeks Matilda loved my milk. But at the point that she started to be upset all the time she also didn’t want to feed. She would latch on and I could tell she was hungry, she would drink for a few seconds, sometimes a few minutes and then pull away upset, coughing, spluttering and choking. When she was asleep she would pull faces like she was in pain. I could see the pain in her face and see that something was coming up her throat but then back down again and hurting her.
I spoke on the phone to the health visitors and they advised to speak with a Breast feeding support worker. The next day the breast feeding support worker came round and she suggested that I had an over supply of milk (after the three week growth spurt), which meant Matilda was getting too much fore-milk rather than hind-milk which was giving her tummy ache. To stop this I should either express an ounce of milk before each feed (this seemed silly to me as this would then only up my supply further) or block feed (do three feeds from one breast then switch) to make sure she was getting to the hind-milk. So I did the one ounce expressing for one day (before deciding I thought this was silly) then I went to block feeding, but after several days this had no effect whatsoever.
I spoke to more breastfeeding workers and they said that what I was doing should work.
I was also using gripe water and infacol and they were also not working.
I was getting upset everyday, thinking that I just want to feed my baby but knowing that something was making her all upset when I did, and I didn’t know how to help her.
Night after night I spent my time reading forums and blogs and I was becoming more convinced that all the signs pointed to silent reflux.
So by week five I took her to the doctors, they said she ‘just had colic’ and some babies ‘just cry’. I knew they were wrong, let’s call it mothers instinct.
The day after I saw the doctor I had the health visiter come around. She was the first person to actually watch Matilda while we tried to feed and she said ‘she hasn’t got colic, you can see she’s in pain. She definitely has silent reflux’. So again the next day I headed to the doctors, who told me that he didn’t believe she had silent reflux and even if she did he couldn’t give me gaviscon because breastfed babies can’t have gaviscon. I left heartbroken, not knowing what to try next.
That night Milo’s mummy sent me the picture of the back of the infant gaviscon packet which clearly stated – breastfed babies can have gaviscon mixed in water in a bottle before a feed. So the following day off I stormed back into the doctors, furious and I told them I wasn’t leaving until they gave me gaviscon.
So I was giving her this for two days. Yes I know two days doesn’t sound like a long time, but when you have a baby that is to upset to feed and screaming every single minute she is awake, two days is a lifetime, I just couldn’t take it any longer. One of those days was so bad that I nearly walked out of a baby massage class as Matilda was so upset, after the class I cried all the way to Boots, where I bought a tommy tippee perfect prep machine and some formula milk – I couldn’t carry on thinking my breastmilk was making my baby so upset. I went back to the doctors and luckily for Matilda and I we managed to see a different doctor and I demanded that I get a referral straight away to the hospital as nothing was working. The doctor was very understanding and did us an emergency referral to the paediatrics for next working day. We were then seen by the hospital the day after that.
The paediatrician advised that Matilda had cows milk protein allergy. I still wasn’t convinced, I questioned how he knew it was that and not silent reflux when the symptoms are so similar and all he had done was look at her. He advised that they are similar and therefore they usually atreat it as a milk allergy which can cause silent reflux and treating the allergy will stop the reflux. So he prescripted Matilda ‘Pepsi 1’ formula milk.
Matilda was on this milk for one week and we saw no signs of improvement. So I was back on the phone to the Paediatrician who then prescripted ‘Neocate‘ milk.
The Neocate seemed to help Matilda slightly, but she would still scream the majority of the time she was awake. As she was a little better I gave it three works to make sure my breast milk was out if her system and the Neocate had a real chance to work. But she was still so unhappy, we would go out and see people but I would’t trust anyone to hold her as I felt I was the only one that could sooth her. I never left her side for the first ten weeks of her life.
So at ten weeks I spoke with the Paediatrican again and advised that she still has signs of silent reflux even though I haven’t given her any cows milk for four weeks. So he then prescripted Omeprazole for reflux (FINALLY).
Matilda then started to get better, she started smiling more and having fun rather than crying all the time. It still wasn’t easy – the neocate milk tasted awful (yes I tried it) and she kept going through periods of not feeding, and up until she was about ten months old she would never drink more than 3-4 oz at a time. Which meant she didn’t stay full very long so I had to keep trying to get her to feed little and often, but this then caused a feeding aversion and made her refuse the bottle even more. The dietician told us to try her with food any time after she was four months old – as most CMPA babies hate their milk so trying them with food would be exciting for them. But not Matilda, she didn’t like food either (we started her at five months), she still associated drinking and eating with pain.
Just before Matilda turned one we saw the dietician again and started her on the milk ladder. She flew through it and was drinking whole cows milk three weeks after starting the ladder. I know most babies do out grow CMPA within the first year anyway but I still do believe that she never truly had CMPA and it was silent reflux all along. I 100% believe in mothers instinct. Looking back I would have liked to have carried on breastfeeding and cutting cows milk out of my diet and just trying her on reflux medication. However, at the time Matilda and I were both so upset everyday that I didn’t want to wait 4/6 weeks for the cows milk to go out of my breastmilk I wanted an instant solution to the problem, which I was giving her milk that definitely had no cows milk in it.
Every baby is different and different medication, milk and even soothing techniques work differently for each child.
But for Matilda I would say the key signs of silent reflux were:
Coughing / Spluttering
Gagging
Hiccups
Difficulty feeding (pulling away from breast / bottle)
Excessive crying
Arching her back during and after a feed / drawing her legs up to her tummy after feeding
Swollen Tummy
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