Being a parent is one of the hardest things I think anyone can do and when you throw allergies into the mix things become even more challenging. Part of this week is to share the like of those suffering with allergies but also those parents who have struggled through the system like I did to get that diagnosis for there little ones. Carly from Keep Em Quiet has really given us an honest and heart warming story about her little girl and her allergy journey. Carly runs a successful business with her husband called Keep Em Quiet which offers travel packs for kids of all ages so make sure you go and check out the links at the bottom for anytime you need to make those stressful journeys with little ones 10 times easier.
When Ally at Life With My Little Duck (www.lifewithmylittleduck.wordpress.com) approached me to share my experience with a baby with allergies I immediately felt a pang of anxiety. My little girl has come so far with her allergy journey that I knew it would take some strength to rewind the clock and relive some of the darker times we shared. Yet I agreed, because I felt completely out of my depth when faced with these issues that if sharing my story can help anyone it is worth reliving the emotions for.
My daughter arrived into the world like a lightning bolt. I went from 0cm to fully dilated in 13 minutes and she arrived after just a few pushes. They barely had time to get me from the induction ward to the birth centre. I knew what I was doing this time around. I was so excited to have her in my arms and get her home that very day. My 2nd baby which meant i was a dab hand at nappy changing, feeding, burping, holding her – i felt no anxiety like I did with my son. I had this! Or so I thought…
At 3 weeks old we had a Dr over to see my son who was unwell. Whilst he was there I decided to pick his brain about my little lady. She had been miserable for quite a few days now, milk was coming out of her nose often, she had perpetual hiccups, her nappies were all wrong, and she seemed uncomfortable and unhappy. I definitely did not have this as I had first thought when she arrived! I was scared and sad for my baby who seemed so miserable. He immediately said it sounded like reflux and had I done anything differently the past few days. I had! Just as I had done with my son, I introduced a night time bottle of formula at 11pm so as I could try and get some sleep in between feeds whilst my husband gave that bottle. And here starts the allergy journey for us.
We were fortunate enough to have a Dr who immediately made us aware that it was likely our little lady had a Cows Milk Protein Allergy (CMPA) and was reacting to the strength of the milk formula. He suggested I cut out dairy, soya & egg from my diet and continue breastfeeding her to see if this helped. Without question I committed to this diet and immediately saw improvement. I also begun to medicate the reflux (at first with Ranitidine which didn’t help at all, and then Omaprazole which massively helped). After weeks of cutting out these ingredients I introduced them to see the effect. As soon as I did it was clear that they were the cause of so much of the problem. After eating a bit of soya in some bread I changed 15 mucus nappies the next day. Her little tummy was so effected by dairy and soya. I was actually too scared to introduce egg after the awful reactions to soya and dairy that I never knew whether egg was a problem or not, i just kept it all out of my diet.
I know how incredibly lucky I was to have had a private paediatrician help me on my journey with my little girls allergy. I reconnected with a friend on a CMPA forum who was battling with the NHS every step of the way to get the right care for her baby. I really do get it though. If you have a baby with CMPA it is likely that unless you commit to breastfeeding and cutting everything out of your diet, you will end up being prescribed Neocate which is so expensive and therefore an absolute last resort for the NHS to prescribe.
After months of feeding my baby breastmilk and changing my diet, the reflux was still not fabulous and the nappies were even less so. Dairy and soya most definitely played a huge part in my daughters discomfort but there was more going on and was still very uncomfortable and unhappy. And so I was prescribed the magic Neocate. By this point I was a total broken mess.
4 months of practically no sleep. Due to her tummy issues my daughter snacked on milk round the clock. She took so much comfort from breastfeeding but we were in a catch 22. Because she was uncomfortable she wanted to feed, but because she was feeding so often she was even more uncomfortable. I begun expressing to attempt to get a few hours freedom here and there, but she wouldn’t take a bottle. She had become bottle averse due to me not introducing one earlier after the 3 week formula disaster.
I had a wedding looming where I knew I had to leave her for a long period of time and everything felt completely overwhelming. Taking away her comfort, getting her on a formula which tasted so disgusting in comparison to breast milk. I couldn’t do it alone. After a long painful journey I finally broke and needed my hand held. In stepped the most wonderful lady – Helen Hughes is a maternity nurse who has had so much experience with reflux & allergy babies. And completely frazzled mummies! She helped me to get my plan in motion. To get my little baby to finally take a bottle, first of expressed milk and eventually we slowly introduced the neonate. And suddenly there was some light! Along with a heartbroken feeling as our breastfeeding journey ended. But the light was bright because Neocate gave me the happiest healthiest baby. She suddenly thrived! She slept better, drunk more milk, her reflux improved, and what had felt at times like a living nightmare now felt like a distant memory.
The early baby months are never easy, but my reflux and allergy experience pushed me to the brink. I have faced a lot of challenges in life but this was by far my most difficult. I felt alone, useless and wounded so much of the time. I was all my daughter wanted but even I couldn’t take the pain away. As a Mummy all you want is to take the pain away. I was neglecting my son because my daughter needed me so much and things felt really brutal at times.
But we have come on leaps and bounds, something I never felt possible. We were meds free by 1 years old, and things were going well on the milk ladder which I started around 10 months old. By about 13 months old, the NHS said they could no longer prescribe me the Neocate and I managed to successfully get her on to the very formula that at 3 weeks made her so sick. She continues to thrive! She’s a sassy, happy, healthy little lady, and the sadness of those early months has faded with time, along with her intolerances.
I will always feel a sense of sadness for both my daughter and I that things didn’t go to plan like I hoped, but then not a lot with children does. You write a birth plan, and that goes out the window once labour decides how to treat you. You have expectations of the type of parent you will be, and then sleep deprivation and a lack of hands means that you don’t change out of pjs and baby gros for weeks on end. And you have a baby with all the confidence in the world that this time will be easy, and you are thrown reflux and allergies into the mix. And with the hard times of those early months came a bond with my daughter that is unbreakable. We kept each other company through each of our journeys, she lay by me for months of end. (My husband moved in with my son so one of us was getting some sleep!) Even through the hardest times, those quiet sleep deprived feeds in the night with my precious baby will forever be held dear.
Allergies are awful but I know we were fortunate to not have an extreme case. The forums I was in for support highlighted to me terribly sick little babies failing to thrive and it broke my heart. My little princess was uncomfortable and in pain but she was always gaining weight. Although our journey may not have been the worst it can be, I know I felt so alone and low at times, and anyone that told me it would be ok gave me the confidence to know that this difficult phase would pass.
So if you are struggling with reflux or CMPA or even a bottle averse baby know that things will improve. It may not be overnight but life will find some normality and you will find your way. If you suspect your little one is reacting badly to dairy then push to see a specialist. Getting my baby on Neocate was a total game changer and I often wonder if I had been prescribed it earlier how different those early days would have been.
But one can only look forward and this was the journey we were meant to share together. The experience that shaped who we are and continues to. Laid the foundations for the purest of love, a love that pushed boundaries. My baby girl came first and will continue to for my whole life. Never have I been so committed to a diet – she was and is my inspiration to do the best by her and my son daily. So yes, allergies are awful, but being a parent is never a smooth ride and you just have to ride those bumps as smoothly as you can.
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