Our journey with acid reflux and CMPA and how we came out the other side
The early days with milk allergy
In this post I’d like to explain the reasons for my daughter’s dairy free diet and how it all started.
As I mentioned in the ‘About’ post my daughter Phoebe was born with milk protein allergy. This wasn’t diagnosed until she was about four months old. She was described as unsettled, hard to feed, she developed acid reflux as a symptom, she hasn’t been gaining weight properly, she has never slept and she was generally very unhappy little baby.
I don’t have to go into details to explain how hard life was then. I found so much support online from other mums and I don’t know how would I get through those first few months without their tips and advice. One site in particular was super helpful and I learnt a lot from. If you are after some support check out http://www.infantreflux.org.
I had to argue with various medical professionals until we were finally referred to a specialist who diagnosed Phoebe with severe acid reflux and cows milk protein allergy.
The early symptoms of CMPA
Slow weight gain
Runny, explosive poos, often full of mucus
Eczema on forehead
Clenched fists, tense in general, uncomfortable to be laid down flat
Very often hiccups, acidic breath smell
Unable to feed more than 30ml at the time
Cry straight after feeding
Unhappy in a pram, cot or a car seat
Only settled with a constant movement (bouncing on a gym ball)
Phoebe was put on a special amino acid formula called Neocate (after we trialled few different ones) and she was prescribed medication (Omeprazole) which reduced the production of acid in her stomach to allow her oesophagus and digestive system to heal. It took about four weeks until we saw a big improvement. Finally she was a happy baby, we got lots of smiles and she started to sleep ‘like a baby’ for the first time. Her eczema disappeared and she was getting chubbier by the day. For the first time I started to enjoy life as a mum.
Weaning and the Milk Ladder
Sadly, some of her issues returned after starting weaning (at about six months). She had a constant diarrhoea, vomited when starting new food and has lost some weigh again. It felt as if she was allergic to everything I fed her! After being fobbed off again by her doctors who put it down to a ‘stomach bug’ I decided not to waste any more time and we paid for a private paediatrician gastroenterologist. The doctor explained that because Phoebe’s digestive system was irritated so much at early age she has developed a lot of digestive issues and her body is almost ‘attacking’ the new food in a way that allergy does. He explained that Phoebe will naturally get through this by exposing to new food and persevering with feeding her different types of food. As always I have done my own research on gut healing food and I made sure I added these to her diet.
If you are interested to learn more about gut healing I recommend this book about Gut and Psychology
I also added multi strain dairy free probiotics daily in her formula. I have tried different brands and currently am using this one which is my favourite. It has made a massive difference my my daughter’s digestion and it naturally boosts immune systems by creating healthy microflora in the gut.
Often I felt that she was so behind compared to other same aged babies, but week by by week she was getting better and started tolerating more and more food. Today, Phoebe at 21 months is eating pretty much anything and we are reintroducing milk into her diet under the dietician’s guidance. Currently, she can tolerate milk powder in biscuits, crisps and other processed food with added milk. Next step is trying a bit of cheese or milk used in cooking.
Milk or no milk
Even if Phoebe might not be able to get to the top of the milk ladder (meaning a glass of milk or a fresh yoghurt) I no longer fear that this will impact on her daily life. Luckily, there are so many dairy free products and alternatives and more and more people are choosing to go ‘dairy free’ out of choice. I have learnt so much about food and nutrition since the beginning of this journey and I would be happy to share more tips with other people. If you had a similar experience or you would like to share your tips, I would love to hear from you.
I decided to list few other things that helped on our journey to recovery and I would absolutely recommend trying:
Infant reflux support for gerdlings support group on FB Somehow I landed in this group at my absolute breaking point and I got so much support and advice that I managed to push through and got us to where we are now. Knowing that there are so many mums going through the same helped and also reading the success stories helped me to remain positive. There is so much knowledge in this group I can’t recommend it enough.
The Sensational Baby Sleep Plan book saved our sanity and Phoebe learned to sleep within two nights. Until then she would only sleep while bouncing on a gym ball. The author is very knowledgable about baby reflux and cmpa and I used her skype consultation which was worth every penny!
Neocate formula was a game changer formula and luckily for us, here in the UK you can get this on prescription. It took good four to six weeks to see a major difference, but symptoms such as eczema disappeared within first few days. The taste is very different to other formulas so I added a teaspoon of maple syrup to the first few bottles to mask the taste.
MAM bottles were a god send and I really saw the difference in Phoebe’s feeding. It was much easier for her to drink from and she didn’t get gassy and hiccupy like she used to. I also like that you can take the bottles apart for a good clean and sterilise them in a microwave.
Baby movement monitor was something I didn’t have for Phoebe when she was a new born. When she was diagnosed with cmpa and reflux I found out that sometimes due to acid reflux babies can stop breathing or hold their breath and baby monitor works great as the beeping sound literally gets baby to breath again as the sound wakes them up. The monitor set off only twice in the past and I’m not totally sure why but it surely gave me a piece of mind knowing it is there! We are still using the monitor but we have turned the movement sensor off as she is a toddler now.