Mama & Baby

F**k you Reflux (and CMPA)

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I can honestly say that reflux and cows milk protein allergy (CMPA) robbed me of my maternity leave. I wasn’t able to enjoy my newborn like other mums, as either Noah was crying, I was crying, or we could get him to feed, or we were moping up sick. I relished the rare moments like the picture above, where I felt like a normal mum (he is 5 days old here). Unless you have had a reflux or CMPA baby, you have no idea how bad it truly is. When people say “oh my baby had reflux, they used to spit up a bit” or “my baby had reflux, they had do be rocked to sleep” they deserve a big fat slap around the face. It’s so much more than a little bit of baby sick. I can honestly say that reflux and cows milk protein allergy (CMPA) robbed me of my maternity leave. I wasn’t able to enjoy my newborn like other mums, as either Noah was crying, I was crying, or we could get him to feed, or we were moping up sick. I relished the rare moments like the picture above, where I felt like a normal mum (he is 5 days old here). Unless you have had a reflux or CMPA baby, you have no idea how bad it truly is. When people say “oh my baby had reflux, they used to spit up a bit” or “my baby had reflux, they had do be rocked to sleep” they deserve a big fat slap around the face. It’s so much more than a little bit of baby sick. It’s frustrating, physically draining, and emotionally exhausting to say the least!

From 2 weeks old I knew that Noah wasn’t a ‘normal’ child, whatever normal was. I’m ok with saying that now, I wasn’t, but I am now and I don’t feel guilty for saying my child isn’t/wasn’t a normal textbook baby. I spoke about our breastfeeding issues in my tongue tie blog, but feeding issues went much further than just breastfeeding.

Besides the difficulty latching, there was sick. Lots of sick. Yes I know babies are sick, I’m talking entire feeds, projectile (even out his nose), lay on his back shooting up in the air and splatting all on his face kind of sick. The outfit changes for both him, my husband and myself were unreal, our washing load had increased significantly! This didn’t just start over night, it was a gradual thing that was progressively getting worse.

On Noah’s one month birthday, we took him to the GP as I suspected he had reflux. The GP agreed and prescribed gaviscon infant sachets (useless stuff) but also sent us to be monitored in A&E as he had bronchiolitis. Two weeks later we were sent back to A&E as the gaviscon wasn’t working and I spoke to the GP about the possibility of a milk allergy (I wasn’t au fait with the terms at this point) to which I was scoffed at. Noah’s feeding was observed and we were started on ranitidine, I needed to start a dairy free diet, and nutramigen (hydrolysed formula) for mixed feeding. I was advised to get him weighed weekly to monitor his gains.

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We continued as the Drs told us, but things just went from bad to worse. He barely fed at all. Each time he did feed whether breast, expressed, or formula he would scream, back arch and push everything out his mouth but instantly root again as he was hungry. He would take 1oz here, 0.5oz two hours later and so on. It was exhausting, upsetting, and frustrating.

Our weigh day was a Monday afternoon. And this weigh day when Noah was 12 weeks old particularly sticks in my mind, as it was our lowest point yet. We went to coffee morning with our friends and Noah became completely inconsolable. He wouldn’t feed, wouldn’t take a dummy, wouldn’t be cuddled, wouldn’t be rocked or bounced, and wouldn’t sleep. We left early and went home. By lunchtime he still hadn’t settled and was screaming like I hadn’t heard before, a different cry, and I was certain he was in pain despite calpol being onboard. I called my husband home from work as I just needed five minutes to myself, to compose, pee, and eat – id mastered eating quickly by this point. I videoed him to show the Health Visitors and Drs what he had been doing. We went to weigh in clinic ready for when it opened, with Noah still screaming. I completely broke down when I got there (even now writing this its made well up) and said “I can’t do this, I can’t take it anymore, I don’t know what’s wrong with him” they took Noah and weighed him for me whilst I spilled everything out to the Health Visitor about what had happened in the last 12 weeks. She said he and lost weight since last week after previously maintaining, and had dropped in centiles, and clearly wasn’t a very happy baby at all. They rang and spoke to the GP for me, and eventually we were sent to A&E.

He still wouldn’t feed in A&E, they watched him try breast and bottle, and saw the struggles we were having, and the consultant decided that he needed to be admitted to the children’s ward. They said his reflux was severe and not under control, so started him on omeprazole. He was dehydrated from not feeding, had completely worn himself out from crying all day. I made a little nest out of rolled up blankets in the cot, but at night he couldn’t settle and needed the confined space of a newborn crib from the maternity ward. The Consultant decided that he was to stay on the omeprazole and return to a dairy diet (I celebrated by promptly going down to the hospital Costa and ordering large latte’s for me and my husband!) as the nutramigen didn’t do anything apart from make the sickness worse. We were discharged home the next afternoon.

After Noah’s tongue tie division had healed, I went back to the GP armed with information on different milks, GP formulary’s and costing sheets as after hours upon hours of middle of the night googling sessions, I was 100% convinced that he had CMPA, and I had already resumed a dairy free diet. After pleading with them to trial him again on a different milk, they agreed and prescribed one tin of Aptamil Pepti 1. After 24 hours we had a different child. The change was completely amazing! No sickness, no explosive nappies, and best of all he fed calmly and quietly. After the Health Visitors argued with the GP surgery, they managed to attain a repeat prescription of his milk, saving us from having to remortgage our house to cover the cost of the phenomenally expensive milk. Noah went from strength to strength, and we even managed wean off medication. Whilst the omeprazole helped his reflux, the sleep issues it caused were horrific. We would be up 15 times a night easy having to resettle him. But it was a small price to pay for him being comfortable.

We went on to have more follow-up consultant appointments, and urgent referrals were made to dieticians and an allergy consultant, as through weaning allergies to soya, tomato and possibly mango had become apparent.

You would think here endeth our story, but no. I stopped breastfeeding Noah on his 8 month birthday. A bittersweet day. As much as I was going to miss feeding him, I was looking forward to wearing a normal bra, and eating chocolate! After two weeks of increased formula intake (as he was having no dairy free breast milk) we were back to square one. We spent 2 hours at the allergy clinic where Noah had skin prick testing done, and it was decided he would change milk onto Neonate, an amino acid milk and he was restarted on ranitidine. Within 24 hours he was almost symptom free.

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Since that day, he has gone from strength to strength, and is thriving on Neonate. He is finally the happy little boy we were so desperate to have in those first few months. He still has medication, that is being increased as he grows instead of being titrated down, but I can live with that as long as he is happy. I look back now and it saddens me that I wasn’t able to enjoy the first few month to their fullest with him. I feel that it has only been in the last four months that we have really started to truly find our feet as a family of three.

For anyone readying this who is where I was a few months back, it does get easier, I promise you. It will take time, a lot of trial and error, tears and sleepless nights, but it will get better.

Love

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Since that day, he has gone from strength to strength, and is thriving on Neonate. He is finally the happy little boy we were so desperate to have in those first few months. He still has medication, that is being increased as he grows instead of being titrated down, but I can live with that as long as he is happy. I look back now and it saddens me that I wasn’t able to enjoy the first few month to their fullest with him. I feel that it has only been in the last four months that we have really started to truly find our feet as a family of three.

For anyone readying this who is where I was a few months back, it does get easier, I promise you. It will take time, a lot of trial and error, tears and sleepless nights, but it will get better.

Love

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