Tuesday, 29 January 2019

Switching from breastfeeding to formula with a CMPA baby: My Experience

In my post The End of Dairy Free Breastfeeding: My Experience, I discuss how I came to the decision to stop breastfeeding Matilda and the emotions of making such a big change. 

Once the decision was made, I had to determine how I was going to do this. My GP advised me to make the change gradually, increasing the volume of extensively hydrolysed formula each day. I was to start with one feed per day and gradually increase it every few days. 

Matilda had always happily taken expressed breastmilk from a bottle without hesitation so I thought switching from breast to bottle would be easy. I soon found out I thought wrong!

Day 1, I excitedly made up her first bottle, cradled Matilda in my arms and offered it to her. She just looked up at me with her big blue eyes and kept her mouth tightly shut. Maybe she wasn't hungry. So I wait until she showed signs of needing a feed and tried again. This time she screamed at me! What was wrong? Whenever I offered her a bottle of breastmilk she would grab it excitedly and gulp down the whole bottle without coming up for air. Matilda was so worked up, I knew it just wasn't going to happen today, so I put the bottle aside and feed her at breast. She calmed down, fed happily and fell asleep. It's ok, it was just the first try, I would try again tomorrow.

The next day however was no different and I ended up breastfeeding her again after another failed attempt. Was I giving in too easily? Is weaning her off breast really the right decision? I decided to do my research. The first formula we were prescribed was Nutramigen and if you have ever smelt it, you will know it has a very unpleasant stench. Kind of like wet peeled potatoes. Maybe it was the smell putting her off. I read about other mums' experience of using Nutramgien and there were several things they commonly recommended to try which they had found worked.

These were:
1. Mixing small amounts of the formula into breastmilk and gradually increasing the amount of    formula in mixture until it consists of formula only.
2. To add a small amount of vanilla essence to the formula to make it sweeter like breastmilk and to help mask the smell. 
3. Completely withhold breastfeeding until they were hungry enough to take it.
4.  'Dream feed,' the formula while they slept to get them used to the taste.

The first option made the most sense, so I started there. I mixed 1oz of formula with 6oz of breastmilk and offered it to her. It was such a small amount of formula I was sure she would take it. But once again she refused. I tried this method a couple more times but will no success. It was time to try option two. 

I didn't like the idea of adding vanilla essence to the formula. I was concerned that it would give Matilda a sweet tooth but I needed to try something different and a lot of mums had claimed they had great success with this method. So I cautiously added one small drop of vanilla to her formula bottle. It certainly made it smell better. Maybe this was it...or maybe not! Once again Matilda just wasn't interested. This time she had attempted to try the bottle, but after one taste, she turned away grimacing. It was progress I suppose and maybe one that would have worked if I had continued to try but in the end I decided just to try another tactic. 

The idea of completely withholding breastfeeding until the baby is so hungry they would take it, didn't sit easy with me. I had seen Matilda is pain and discomfort when she was reacting to the cows' milk protein in my breastmilk and I couldn't bare the thought of her in any kind of distress again. So I decided to skip this step and move straight on to the final suggestion...dream feeding!

I waited until the evening, Matilda had been breastfeed before going down to bed and was due to wake up within the hour for her next feed. I made up the bottle of Nutramigen and gently pressed it against her lips. To my surprise, and relief, she began to suck. Result! She managed 2oz before she fully woke and refused any more. I then breastfeed her to finish off her feed and she gently dozed back off. I was so happy to find something that worked. Unfortunately, as I have mentioned before,  Matilda had a reaction to the Nutramigen, which apparently is very rare and we had to move onto Neocate, an Amino Acid based formula. (For more information on formula options for babies with CMPA see my page Bottle Feeding Dairy Free: Formula Options)

The new formula still had a slight smell but it was nothing compared to the Nutramigen. I decided to keep with the dream feeding tactic and within a couple of days Matilda was happily taking her bottles while she was awake without any ill effects. I continued to combination feed until we were both ready to fully stop breastfeeding. She now is completely bottle fed, happy, healthy and meeting above and beyond her milestones.




Friday, 25 January 2019

The End of Dairy Free Breastfeeding: My Experience

Breastfeeding is a wonderful thing to do if you can, for yourself and for your child. But lets face it, it can be hard. I was completely unsuccessful first time round with my son, who ended up being exclusively expressed breastfed. I remember the guilt I felt that it hadn't worked. The middle of the night crying sessions because he just wouldn't latch or from the stinging pain from mastitis when he did manage to. I remember thinking how can something so natural be so hard to do. So I didn't expect it to work with Matilda either. I was shocked and amazed at how easily breastfeeding came second time around. Maybe it was because I didn't put as much pressure on myself, or set myself too high an expectation, as I knew I could express breastfeed again if I needed to. Anyway, it worked and I couldn't have been more pleased.

Then, very quickly we discovered Matilda was allergic to cows milk protein and thus began our dairy free breastfeeding journey. To read more about my experience of dairy free breastfeeding, click here.

One of the main reasons I decided to dairy free breast feed, on top of the usual benefits of breastfeeding, was because it gave me a sense of control and also the reassurance that so long as I stayed cautious and did not ingest any dairy, Matilda would be a perfectly healthy baby. This was a very comforting thought. I did not have to worry about trusting anyone else for my daughters safety and wellbeing.

The second reason I choose to dairy free breastfeed was that if Matilda could not have the usual standard formula, what would she be putting into her body? I wasn't aware of my options at this point and I hated the idea of her having something over processed or synthetic at such an early age.

So I breastfeed happily for just short of 6 months. But it was challenging, my three year old really struggled with the amount of time it took, becoming extremely jealous every time she fed, and juggling two young children was difficult. I remember being at the park with my friend and her young children when Matilda needed fed. I got myself comfy and watched happily as my son slide down the slide, shrieking with excitement. This is perfect...or so I thought! I was awoken from my blissful illusion by my three year old shrieking 'Mummy I need a poo!' At this moment, I have to point out it had been five days since his last bowel movement as he had suddenly developed a fear of them and would not go to the toilet. I couldn't believe his timing. My friend was a superhero that day, she whisked out a portable potty from under her pushchair and set it up for me. He quickly moved the potty to where he was most comfortable and sat down to do his business. Unfortunately, where he decided he would be most comfortable was at the bottom of the slide. In a very busy park! Great. I knew he would be there for sometime, so I sat myself down on the muddy, hard floor of the park next to him, Matilda still attached to my breast while they both saw to their basic needs. I looked up at my friend and we both laughed. You just could not write this stuff. The glamourous life of being a mother.

We were also about to embark on an exciting trip to Italy for my Mum's 60th Birthday. I had dreamed about going to Italy since I was a young girl and I was really looking forward to it. I knew it probably would have been easier to continue breastfeeding whilst travelling, all you need to take with you is your breasts after all, but I was really concerned that I would not be able to guarantee what I was eating was dairy free. I was, after all, going to the land of pizza, fresh pasta and gelato.

So I discussed the  breastfeeding challenges I was facing with my Health Visitor and decided to see my GP about the formula options for children with a cows milk protein allergy. (For more information about formula options click here). My doctor wrote me a prescription for Nutramigen and I collected it from my local pharmacy and took it home.

The Nutramigen sat in a cupboard in our kitchen for ages. I was still deciding. I would have endless conversations with my husband about whether it was the right decision. What if I stop breastfeeding and she has an allergic reaction? Once my milk is gone it would be so difficult and painful to get back, or so my Health Visitor informed me. Was I being a selfish, bad mother for not continuing? It weighed heavy on my mind night after night.

In the end, I decided I would go ahead and try combination feeding. That way Matilda could have a couple of bottles in the middle of the day, when I was out and about (I didn't want any pooing in the park repeats!) and I could breastfeed her the rest of the time. This also meant that I could give Matilda formula while we were away in Italy and just 'pump and dump,' while we were there to keep my supply going and protect against any unintentional ingested milk incodents. Unfortunately, the Nutramigen did not agree with Matilda and her symptoms came back immediately. Which since, I have found out is very uncommon. So we were moved on to Neocate LCP which agreed with her much better and happily began our combination feeding journey.

However, my joy at finding what felt like the perfect combination for us, didn't last long. Although lots of people have success using combination feeding, my body did not respond well to it and I noticed my milk supply was dwindling. Matilda was getting frustrated while breastfeeding and would be on and off me like a yo yo all night. Feeling comforted about the fact Matilda was responding well to the Neocate and that my son was feeling more included and enjoyed feeding her a bottle, I decided, after a few more nights of debating with my husband, it was time to end my dairy free breastfeeding journey.

I was sad about it ending and there are times when I do miss it, but when I look at Matilda happy and healthy and look at my son finally enjoying having a baby sister, I know I made the right decision for our family at the time.

Only you can decide when to stop dairy free breastfeeding. You may feel sad and you will worry, but you are not a bad mother because of it. Do what is best for you and your family. We will not judge you what ever you decide.


Wednesday, 23 January 2019

Hope for the Future Treatment of Food Allergies

Earlier this week, I shared an article on my Instagram page from The Independent online, that highlights a medical study by Italian and US doctors around gut bacteria and its role in the treatment and prevention of allergies.

The article, titled 'Gut Bacteria transplant shown to prevent deadly allergic reaction, giving hope to future treatment,' states that the research has shown how levels of single-celled microbes in the gut play an imperative role in the development of food allergies. Their research has shown how transplanting gut bacteria into a subject can prevent severe reactions such as an anaphylaxis response to an allergen such as cow's milk protein. They believe their data is 'paving the way for innovative interventions for prevention and treatment of food allergy.'

As a mum of a child with a cows' milk protein allergy, this is the kind of thing I want to read about. Like any mum, I would happily swap places with Matilda to prevent her any suffering. Although the article is an overall positive read, there are many questions it raises. Will it just prevent an anaphylaxis reaction or all types of reactions? What would a gut bacteria transplant physically involve? And what is it's success rate?

The article states it is giving hope, let us hope it does not turn out to be false hope.

The read the article yourself and make up your own mind, click here

Monday, 21 January 2019

The Beginning of Dairy Free Weaning: My Experience

So it was time. I'd waited long enough. Just over 6 months in fact. I needed to start the weaning process for Matilda. With my older son. who is allergy free, I was so excited to start this step. He was so desperate to try food and was grabbing our hands and pulling our forks full of food towards his mouth. He was ready and loved it. Everything we put in front of him, he ate. Easy.

This time however, I was really apprehensive. I delayed it as long as I could. But after our paediatric dietitian appointment we had the green light and advice needed to reassure us to proceed. I needed to decide which meal to start with and I thought breakfast would be the best option as it is our calmest part of the day.

Even though the dietitian had give us a wealth of advice and support, I couldn't help but worry. I searched the shops for a milk free porridge that would be suitable and followed the advice of mixing it with her usual milk. Well having not long stopped breastfeeding, her usual milk was now Neocate LCP. When I mixed it in, it turned grey. It did not look or smell appetising, but it was a taste I supposed she was used to, so I made my best yummy sounds and put on my biggest smile as I offered it to Matilda. This is the moment. Will she take it? Nope. She wouldn't even open her mouth. She turned her head away with a look of disgust. So I tried again, chatting away to her, making even bigger yummy sounds like a scene from Mr Tumble. This time it looked hopeful, she opened her mouth, took the porridge and pulled the most disgusted face I've ever seen on a 6 month old. No, she did not like it at all. I tried again. She shut her mouth tight and turned away. OK, never mind it was the first day, lets try again tomorrow. I repeated this for several days with the same result. It was time to try something different, so I mixed it with boiled water, cooled down to a suitable warm temperature. No, that didn't work either. This was very different from my son's enthusiastic approach to eating. She needed something really appetising to tempt her. Limited by her lack of teeth and inexperience chewing, I decided to try a fruit puree, something sweet.

Something about trying a fruit puree made me really nervous. But she needed to eat something and if she wouldn't take porridge and wasn't quite ready for toast, this was our best option. I peeled back the lid on the pot, took a scoop with a spoon and offered it to her. Her lips automatically shut, as had become the habit while feeding her porridge, but I pressed the spoon gently on her lips. Mmm, this is different she must have thought, as she slowly opened her mouth with a cautious look in her eye. She took the puree and smacked her lips. She loved it and wanted more. I excitedly offered her spoon after spoon as she took every one. However I didn't feel relieved, I felt anxious. I was studying her closely with every mouthful, especially her lips. Was it the puree making her lips look bigger or was she having an allergic reaction and her lips were swelling up? I frantically studied her from every angle, examining her lips, breathing and trying to catch a glimpse of her tongue. It was OK. I could relax, it was just the light hitting the puree on her lips. I felt relieved but then it dawned on me...I will be feeling this anxiety with every single new food I give her. This is the reality of being an allergy mum.

For ideas on dairy free weaning click here.
For simple dairy free weaning recipes click here

Friday, 18 January 2019

Would You Give Your Child Donkey Milk?


So I was doing my usual evening googling session on Cows' Milk Protein Allergy when the title of an interesting research paper caught my eye. It was something I have never heard of before. The article is titled Use of Donkey Milk in Children with Cows' Milk Protein Allergy. Yes, you read that right. According to the paper, unlike goat and sheep's milk which is close in properties to cows' milk, donkey milk is actually more similar to human milk. It states in the past donkey's milk was 'widely used to replace human milk because of its chemical composition, and particularly, protein content are close to that of a human.' It continues to talk about how it is highly tolerable by infants with a cows' milk protein allergy, but however due the nature of donkey milk production it needs to be looked at in order to ensure it is a hygienic alternative to replace hydrolysed proteins or soy based formula.

My initial reaction was that's disgusting! The thought of it really made my stomach turn. But then I began to think, is it really much different from any other animal milk? If it was truly the best option for my child would I really dismiss it just because it made me feel queasy?

That do you think? Would you consider giving your child donkey milk?

Click here to read the research yourself.

Further reading is also available at https://www.horsetalk.co.nz/2018/01/06/review-potential-donkeys-milk-allergy-babies/

Thursday, 17 January 2019

Challenging while breastfeeding: My Experience

I've been thinking a lot today about challenging your baby's cow's milk protein allergy while breastfeeding. It is a scary thing to do as a mum as you know you are giving your child something that could potentially make them very ill. However, it is something that you will be asked to do by your GP, Dietitian and Health Visitor under their guidance.

When I was breastfeeding Matilda, under the advice of the GP, I challenged her by trying a splash of milk in my morning cup of tea. It was nerve-wracking. I spent the next few hours staring at her, watching her every breath, jumping at every cry. At first, she seemed fine, but within a couple of hours, not long after a feed, she began her ear-piercing scream and I knew that was a sign that she was having severe pain in her stomach and it wasn't long until we would be back to several nappy changes an hour.

I refrained from having any more dairy and went back to by milk free diet instantly. Matilda's symptoms quickly settled and we were back to our normal dairy free life. At 6 months old we met with Matilda's Paediatric Dietitian who advised us to refrain from challenging her again until she was 12 months old when we would look at the Milk Ladder and attempt the first step.

We are now weaning dairy free and I moved Matilda on to a suitable formula so that I can now eat dairy again. Something I will never take for granted after 6 months being dairy free.

Click here for more information on Challenging while Breastfeeding



Wednesday, 16 January 2019

Intolerance vs Allergy


This is a topic that always come up when I am discussing Matilda's allergy with people. There are many misconceptions around food allergies and intolerance and unfortunately something like that can lead to life-threatening situations when you have a child with a severe allergy. So lets break it down...

Is there a difference? 

The answer is yes there is! There is a difference in how your body reacts and the symptoms present in different ways. If you are intolerant, your body struggles to process milk, generally resulting in unpleasant digestive issues. Where as with a milk allergy, your body identifies milk protein as a threat and your immune system kicks into action to fight it, resulting in a range of symptoms, some of which are life-threatening. See my page Is my child allergic? Spotting the signs for more information on the different symptoms for an intolerance and allergy.

What does this difference mean?

This means that someone who is intolerant, can usually consume small amounts of dairy and have no severe effects. Often, people with an intolerance can manage some products containing a small amount of milk within their ingredients but not dairy based products such as milks, cheeses and yoghurts etc. Where as someone with an allergy, can have serious, even life-threatening reactions to the smallest, microscopic amounts of milk. Whether they eat it, touch it or even in extreme causes inhale the food.

Conclusion

In summary, an allergy is an immune system reaction, where as an intolerance is a digestive one. A person with an intolerance can manage a small amount of milk, compared to an allergy where the smallest amount can be life-threatening. This by no means suggests an intolerance shouldn't be taken as seriously as an allergy. Both can result in pain and discomfort for the person if they ingest milk and both require a change of diet and avoidance of dairy. One thing is certain for both of them and that is there needs to be a bigger awareness of what a food intolerance or allergy is. People need to be educated to understand the danger of not checking ingredients properly. It may just be a little bit, but it does do great harm.

Monday, 14 January 2019

How it all began...

I knew something wasn’t right from day one while we were still in the hospital. Matilda was a beautiful, squishy new-born, weighing in at a healthy 9lb 4oz. However, she cried an ear-piercing scream most of the time we were in the hospital, was really unsettled and pooed a ridiculous number of times while we were there. This continued at home and she was having multiple bowel movements within 45 minutes and screaming in pain with each one. I remembered saying to the community midwife ‘I know babies poo a lot but she is going several times an hour, is something wrong?’ The midwife just looked at me like I was crazy. ‘She is just a baby, that’s what they do!’  

But I wasn’t a first-time mum, I have had a baby before and this was not normal. This was extreme. Matilda was a super pooper! This continued, Matilda failed to regain her birth weight and therefore was being monitored regularly for weigh ins with the health visitor. They couldn’t work out why she wasn’t gaining the weight back, they consulted a feeding expert on the phone, while I was present, who could not determine what was wrong either. Breastfeeding was successful, she was feeding well so once again I raised by concerns about her Olympic league pooing, only to be told again, that’s just what babies do. 

It wasn’t until she was about 4 weeks old when she began to develop a rash all over her body that became angrier and more present every time I fed her. That was it. This couldn’t go on. I rang my GP as I needed a third opinion. Now here, I have to really commend the doctor I spoke to that day. Straight away the GP said it sounded like Matilda had an allergy to Cow's Milk Protein and advised me (as I was breastfeeding at the time) to cut all dairy out of my diet and he said she should improve within a couple of weeks. I said goodbye to the large coffee shop sized mugs of milky tea and chocolate biscuits that were helping me to survive not only my new-found role as a mother of two, but also my poor timing of deciding to toilet train my eldest while feeding a new-born, and eliminated all dairy from my diet with immediate effect.  

I can not describe my amazement at how quickly cutting dairy out of my diet worked. Within 24 hours her stomach had began to settle. No more super pooing or ear-piercing screams. Matilda was now functioning at what I would consider a ‘normal,’ baby rate. The rash took a little longer, but gradually improved each day as the dairy levels in my breastmilk gradually diminished. By week two, her skin was completely clear and she was a much happier, healthier baby. 

Our happiness at seeing her improve brought a new daunting concern. . . our daughter is allergic to milk! What now?


Sunday, 13 January 2019

Coming Soon in January 2019

Coming soon a mother's experience on raising a dairy free child. Information, tips and advice from a real mum's experience of it all. 

The End of Dairy Free Breastfeeding: My Experience

Breastfeeding is a wonderful thing to do if you can, for yourself and for your child. But lets face it, it can be hard. I was completely u...