Breastfeeding a Baby with Reflux

How to get the support you need

reflux baby help

As a breastfeeding support volunteer, I generally avoid sharing my own story as I prefer to focus on the parent in front of me but bear with me because my story is relevant to why this blog has been written and it is one of the reasons I am so passionate about infant feeding support.

My daughter was a “reflux baby” and she was treated with anti-acid medication for a long while, so when I talk to you about reflux, believe me, I know it, and I know how hard it can be.

I joke that when A was born she cried straight away and didn’t stop! My poor baby spent her first weeks wailing, coughing, writhing and red in the face, pretty much all day and most of the night. I felt trapped in the house. I remember feeling so desperate I wanted to cry when the health visitor left me in the house alone, with a baby who did nothing but scream at me. It was a pretty awful introduction to parenting. At 5 weeks old, she was diagnosed with reflux and we were prescribed infant Gaviscon by our GP. Like many parents, I took the prescription gratefully, and the numerous prescriptions that followed. It was the beginning of a journey which didn’t resolve for another twenty months.

What is problem reflux, or GORD?

Reflux simply means “a flowing back” and many babies spit up and vomit without being bothered by it at all. Problem reflux (GORD) has a variety of symptoms, which you can read more about here. Certain conditions can contribute to reflux, for example, it is more common in babies who are premature or babies who have other health conditions.

A baby who is spitting up a lot without distress or without other problematic symptoms it is unlikely to have reflux disease. If your baby is crying mostly during the evening hours yet content most of the day, they may be experiencing normal baby evening fussies.  So while these things can be alarming for parents (and messy!), it is important to be aware of the difference between what is normal and what is “reflux disease”.

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Mums who worry their baby has reflux often say to me, “I think it’s reflux because he just won’t let me put him down in the cot! I think he hates being on his back.” Here’s a secret which might help you feel better: most newborn babies hate being put down and prefer to be held. That’s normal baby behaviour.

Many medications used in the treatment of reflux disease are used “off-label”, they weren’t originally developed with infants in mind, and there are some studies which raise concerns about their use, especially over long periods of time.

If you’ve read all of the above and you are still with me at this point, I’m sorry. Dealing with reflux is a really distressing and difficult thing to cope with, and I know how it can feel relentless and never-ending. Here is some more information for you to consider.

Some common causes of reflux in breastfed babies

(This is not an exhaustive list!)

1. A shallow latch, or otherwise disorganised feeding

If your baby is not attached deeply to the breast or has a disorganised suckle they may take in more air as they feed. When air is expelled it can result in spitting up. Trapped air can also be very painful for the baby. This can result in reflux symptoms such as back arching, crying, and hiccoughs. Babies with shallow attachment may also struggle to transfer milk, leading to a fussy baby who wants to breastfeed 24/7.

This is why NICE recommends a breastfeeding assessment first as part of its quality standards: “A breastfeeding assessment should be the first step in supporting parents and carers with managing frequent regurgitation of feeds associated with marked distress. Correcting the breastfeeding technique for breastfed infants (for example, positioning and attachment) can improve or eliminate the symptoms.”

Sorting out a shallow latch can be as simple as doing a little work on positioning and attachment. Some babies with shallow attachment may have anatomical differences which hinder deeper attachment, for example, tongue tie or a high arch palate.

This is a great resource to help you with attaching your baby.

2. Breastfeeding management

In the UK we have a cultural expectation of having a few hours between feeds and this impacts on how we feed and treat our babies. Instead of smaller, frequent feeds sometimes we encourage our babies to “go longer” and take in more milk, less often. Some babies cope with this just fine but others may struggle, with large volumes of milk hitting the stomach and then coming straight back up. Some babies may protest- loudly!- about having their feeds delayed. So responsive feeding, and watching our babies instead of the clock may help. More about responsive feeding.

Our babies also spend a lot of time on their backs, which is no help for reflux. We commonly feed babies in the cradle hold, and then they are placed on their backs in Moses baskets and in prams. However, our babies evolved to be held. You cannot cuddle a baby too much. Simply carrying our infants more and experimenting with other feeding positions can go a long way towards helping babies with a tendency to reflux feeds.

3. Food intolerances and allergies

If your child has been properly diagnosed with GORD, and you’ve had a breastfeeding assessment which found no problems, it’s interesting to note research suggests a significant link between food allergy particularly CPMA. Some studies show a link of up to around 40%. CMPA is discussed in the NICE guidelines as one differential diagnosis for GORD.

Does that mean all parents with reflux babies should immediately be told to cut out dairy products? No, I don’t think so.

As you can see above, there are other things to explore before taking drastic steps, unless your child is exhibiting other clear symptoms of cows’ milk protein allergy. If you want to learn more about CMPA you can read my blog, or the BfN factsheet might be helpful.

Addressing attachment, examining the oral anatomy and considering breastfeeding management first is usually quicker and easier than making big changes to your diet. It is far more likely a more commonplace issue is the problem and it can take 4-6 weeks for both mum and baby to be totally free of dairy protein. Looking at the basics first is really important.

If you are concerned about CMPA it’s also a good idea to speak with a GP or health visitor as you may need support from a dietician.

4. More great reading on the management of reflux and other potential causes here.

You’ve had a reflux diagnosis for your breastfed baby. What now?

We’ve talked about the NICE guidelines above and so we know a breastfeeding assessment may be helpful. It’s worth making sure the person who does the assessment is skilled and experienced in doing this, so you probably want to see a breastfeeding counselor, La Leche League leader or IBCLC.

It might be a good idea to make sure you see somebody who is familiar with tongue tie, just in case this is a factor.

The great thing about doing this is that an IBCLC can help you look at the full picture and consider all the angles such as:

  • Attachment and positioning.
  • Your baby’s suck/swallow/breathe pattern.
  • If there signs of oversupply or milk transfer problems.
  • Indications or risk factors for allergies.

In some cases, after doing all of this, medications can be appropriate and necessary. A pediatrician can discuss with you the risks and benefits so you can make an informed choice about the best way forward.

Coping with a breastfed baby with reflux

I’ve made this into a meme, for easy sharing and saving. Basically, “Think Boobs!” (I know, I’m a cheeseball, but I couldn’t resist):

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Reflux does generally pass and get easier with time. With some help and support, it may pass more quickly. Asking the right questions is the first step to moving forward.
How did my own story end? Well, after getting some support from an IBCLC, my daughter was diagnosed with a cows’ milk protein allergy. We finally came off all our medications and beat the demon that is reflux. She still didn’t sleep in her cot, but that’s okay – I liked the cuddles ❤.

This blog is not intended to replace the advice of a medical professional, simply to give information for further discussion. Please make sure any concerns about your baby are discussed with a medical professional or a health visitor.

Find me on Facebook! https://www.facebook.com/OxytocinAndOtherStories

Further reading:

GPIFN: https://gpifn.org.uk/reflux-and-gord/

Kellymom: https://kellymom.com/hot-topics/reflux/

*This blog has been substantially updated from an article I wrote for Breastfeeding Support and Information UK‘s blog “Through the Eyes of a Breastfeeding Support Group” if you like you can still read the original here *

Before You Tell a Breastfeeding Mother to Cut Out Dairy, Consider THIS

Why supporting a breastfeeding parent with their diet is really important if their child has CMPA

giving up milk

I’ve always felt we need to tread very carefully around suggesting dairy elimination for mothers before basic breastfeeding issues have been worked out, and recently I have had personal experience of why it is so important to be mindful.
I don’t consume any milk products anymore, because my daughter has CMPA and I am currently breastfeeding her. I was keen to keep breastfeeding. Breastfeeding a baby with CMPA is really important, it avoids many of the pitfalls of using dairy free formula (like the bad taste), and it protects and safeguards your child’s nutrition. Mothers should absolutely be supported to do this if they need to. At first, I was amazed at how good I felt when I cut out milk (and I still believe it doesn’t agree with me).
2 years in, I’ve recently discovered the downside. I’m currently taking v high strength vitamin D, calcium and omega 3 oils because despite spending so much of my time supporting others and knowing all the recommendations to supplement and be careful with diet, my levels got low, really low. I actually started to feel quite unwell, mentally and physically.
You see, lots of people like to say dismissively “Pfft, we don’t actually NEED milk”, and this is true, however, our bodies do need the nutrients within it. Fats, Calcium, Iodine, Vitamin D. Some milk also has Omega 3 added to it. Non-dairy milk and dairy substitutes often contain lots of Omega 6 (sunflower oils, nut oils etc) but we need a balance of both Omega 6 and Omega 3 at the very least, and while following a non-dairy diet, if you aren’t careful it can be easy to throw this out of balance. Omega 3 is thought to play an important part in reducing inflammation in the body, inflammation is linked to things like joint pain, chronic illness, weight gain, and depression.
Removing dairy from the diet is a huge dietary change, we need to be mindful of that. In my opinion, breastfeeding parents who need to avoid dairy should be offered support with their diet, rather giving them a blanket recommendation to supplement (NICE guidelines), however, unfortunately, the guidance only discusses dietetic input in regards to the child. I feel this is a huge oversight, when treating breastfeeding parents and children it is surely better to treat the dyad, but that aside, things that can help are:
Sometimes, depending on your diet, considered supplementation may be needed.
It is easy to make light of the impact milk elimination might have on a mother’s body, or to forget about this ourselves, especially when we are busy parents whose primary focus is our child. It is easy to let nutrition slip when you are tired and touched out anyway, let alone if you are avoiding a major food group. So if you have an allergic child, I am sending you so much love, I know it is tough! And what you are doing is so important for your babies, and so wonderful, just make sure to take care of you at the same time.
More information and sources:

10 Tips for Seeking Breastfeeding Support in Online Groups

Navigating the world of online groups and forums

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Lots of people feel passionate about the world of online breastfeeding support. It’s easy to recognise the value. I’m a member of several groups myself, I’ve been an admin in an online breastfeeding support group. Mother to mother support is so important. Many of us have found groups immensely helpful. There’s no doubt for me these online communities save breastfeeding relationships in a world where breastfeeding support groups, and even other breastfeeding parents can sometimes be thin on the ground.

The admin teams of good online support groups are amazing too, they give up so much of their time, for free, to support women. It is an incredibly generous thing to do.

An online support group should ideally be a complement to, not instead of, in real life, face to face support. The best groups know this, and you will often see those asking things like “do you have a local breastfeeding support group?” or “have you thought about seeing an IBCLC?”

Online we often don’t have the full picture of what is going on for somebody. Many of us may have also been unknowingly given ‘advice’ which isn’t always evidence-based when it comes to breastfeeding. And when we start to pass that ‘advice’ onwards, that can be a problem.

Examples of commonly heard phrases in online support groups which may be detrimental to another’s feeding journey:

  • “A gain is a gain, don’t worry about the charts- they are based on formula fed babies anyway” (Incorrect, charts in the UK have been based on breastfed babies for years now, and a gain, unfortunately, is not just what’s important, lower than average gains over a consistent period of time = faltering growth and failure to thrive).
  • “Breastfeeding really hurts at the start but just power through!” (Imagine you are a mum with severe nipple damage hearing this).
  • “Just feed, feed, feed” (What happens if that baby isn’t producing enough wet and dirty nappies? Or has faltering growth? Most of the time cluster feeding is normal, but we need to be sure we have the whole picture).
  • “I used formula top ups/bottles/dummies/weaned early and it was fine! No effect on my supply at all!”

So how, as mothers, do we protect our breastfeeding relationship while still making use of the support and information from an online group?

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Identifying a good online breastfeeding support group and making the most of it- 10 tips!

1. If you are seeking breastfeeding support consider the audience. Is this a breastfeeding specific support group? If not, the responses you will get will be wide-ranging and reflect the nature of the group, and not everyone will feel positively about breastfeeding. Are they selling a service, or affiliated with a brand name? If so, consider the information you get might not be impartial. This is particularly true for parenting groups affiliated with infant formula or baby food companies.

2. Ask for evidence if you feel unsure. Never take something at face value, especially if it doesn’t feel ‘right’. There are evidence-based sources out there you can check in with too, a reliable source will be run by a national body like a breastfeeding charity or in some cases a lactation consultant. Alternatively, the national helplines are on hand to talk things through with.

3. Who are the group admins? Are they active? Are there enough of them for the size and activity level of the group? Do you see them addressing misinformation regularly? Importantly- are they nice? Do they treat the members with respect? All of these points are important for keeping groups a positive place to be.

4. If it is a breastfeeding support group, are the admin trained peer supporters or above?  If the admin running the group aren’t trained in breastfeeding it might be wise to be a bit wary, as they may not have the knowledge base to know the good from the bad.

5. Is it a closed group, and do you have to go through a screening process to get into the group? If you are going to discuss intimate details of your life, make sure they don’t let any old random into the group. Some popular parenting websites use an open forum format, where anyone can comment or join in, and the results are searchable and completely open to the public. It is worth considering if that is a safe environment to get breastfeeding information.

6. Do they have group rules? Do they seem well thought out? Are the rules enforced?

7. This might be a controversial point, but it is something I feel is important. If we undermine health care professionals in an open forum we breed distrust among breastfeeding parents when it comes to their healthcare. This, in turn, means we see people disengaging with their healthcare services, and this isn’t always a good thing. Nurses, doctors, dentists, and health visitors can also be participants in the group, seeking breastfeeding support themselves. It’s nice to be nice. So thinking about this point, is the group generally respectful towards health care professionals?

Health care professionals are people who take a lot of responsibility for child health if we aren’t in the consultation we do not know the full picture, and we do not know how what was actually said was interpreted or understood. A good group will ensure the members pass on evidenced-based information without insulting the mother’s health care team, and if they are concerned by the actions of a HCP they will pass on details of the appropriate channels to pursue a complaint.

8. If you have a lactation consultant or are already under the care of a real life breastfeeding specialist, remember they are absolutely best placed to support you effectively. It can be sensible to think twice before you throw out a plan from a professional based on advice you get online. Remember you can always go back to discuss it with the trained person supporting you.

9. What rules are in place about recommending other groups? Some support groups will have recommended groups which they know are safe. If there is a free for all around groups, those groups suggested may not be totally evidenced based. It might be worth asking the admin for their opinion on the groups they prefer.

10. Finally, use normal internet caution within a group. Don’t post identifying information, be cautious with your photos, even with a well-run group, trolls can infiltrate.

Make sure that when you are out there in the big wide internet world of breastfeeding support, you keep yourself safe, and remember you are the advocate for your baby-so if in doubt- check it out with a reputable source or seek out a trained breastfeeding professional.

Breastfeeding helplines and websites

Your health visitor or midwife should know details of local groups in your area, or you can search here for information on your local group.

Helplines

  • National Breastfeeding Helpline – 0300 100 0212
  • Association of Breastfeeding Mothers – 0300 330 5453
  • La Leche League – 0345 120 2918
  • National Childbirth Trust (NCT) – 0300 330 0700

Websites

Colic and Crying Babies

What evidence is there for conventional or complementary colic treatments?

Crying Baby in Brown and Black Hooded Top

A quick skim over most baby advice forums often throws up the same kinds of queries. “My baby is so unsettled – do they have colic?” In response, we often see helpful parents talking about remedies and medicines, which are often easily available over the counter, and discussing what did or didn’t work for them.

Most babies will have periods of crying. Often these ‘witching hours’ coincide with the early evening. This kind of crying tends to peak at around 6-8 weeks and then starts to subside.

Kellymom talks about fussy evenings here: fussy evenings

So what is “colic”?

NHS defines colic as, “Excessive, frequent crying in a baby who appears to be otherwise healthy.” The criteria for colic is often given as more than 3 hours a day, for more than 3 days a week, for more than 3 weeks.

And that is basically it. Colic is simply a ‘medical’ term for a baby who cries a lot, and sadly colic is one of those mysteries of nature; we still don’t actually know what causes it.

Commonly suggested treatments for colic

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Not quite the shelves of Boots the Chemist these days, but when looking for something to help with baby’s colic it can feel like there are a lot of different options people try to sell you! Crying babies are big business. So let’s look at what the evidence says around commonly suggested remedies to treat colic.

Infacol (simethicone) & Dentinox Drops (Dimethicone):

The active ingredient in Infacol is simethicone. It claims to work by helping the little-trapped gas bubbles join into bigger bubbles which your baby can more easily bring up as wind.

What evidence is there that Infacol is effective? Basically – not much!

“But my Doctor/Health Visitor/Midwife recommended I try Infacol?” I often hear parents ask. “Why do they say this if it doesn’t work?”

Well, for the answer to this question, up until 2017 the NICE guidance suggested a one week trial of the orangey stuff. Crucially though, it was not because it worked: “Although studies of simethicone have not provided evidence of benefit in infantile colic … a 1-week trial as a placebo may still be worth a try because … the simple act of being able to give their baby something may help parents cope better with the crying.” (NICE guidance prior to 2017).

It was prescribed or recommended because was suspected to have a placebo effect on the parent.

Since 2017 there has been new guidance in place which says:

“Do not recommend the following management strategies, as there is insufficient good-quality evidence for their use: Simeticone (such as Infacol®) or lactase (such as Colief®) drops.”

There have also been no longer-term studies of the impact of introducing remedies like Infacol into the infantile gut.

Dentinox drops contain an activated version of simethicone called dimethicone. Again, much like Infacol, there is no good evidence that these actually work.

If your health visitor or GP do recommend Infacol or Dentinox to you it may simply be they haven’t yet come across the relatively new guidelines.

Colief (Lactase Drops):

The BfN statement on assessing the evidence for colic treatments shows lactase enzymes like Colief were shown to be largely ineffective.

One small study claimed to show that lactase drops, if mixed with the milk and left for 24 hours before feeding, reduced colic in one randomised trial, but other studies have not shown this. Meanwhile, the positive study was criticised for being small and biased, because it was not independent of industry.

Again, the revised 2017 NICE guidelines have stated that lactase drops should no longer be recommended or perscribed.

Gripe water:

Gripe water is an old-fashioned remedy which has changed substantially in formulation since it was invented. The original ‘Woodward’s Gripe Water’ contained 3.6% alcohol and sugar water! These days the sugar and the alcohol have been removed for obvious reasons, but it is worth thinking about why that original formula may have been effective and therefore why this ‘treatment’ has been passed down through the generations.

A 2000 review found that most of the ingredients in modern gripe water are of little value in relieving discomfort. It is worth bearing in mind that the WHO says receiving any liquid other the breastmilk in the early months can have a detrimental impact on establishing breastfeeding as it can replace breastmilk intake.

Homeopathy or herbal treatments – colic granules e.g. Nelson’s granules, Colocynth Crystals, Fennel Tea, Star Anise:

There is only low-quality evidence to suggest homeopathic and herbal remedies are an effective treatment for colic.  It is also important to consider the possible impact of such treatments on your breastfeeding relationship and on your baby’s developing gut biome. As with gripe water, concerns have been raised about the possibility of these liquids reducing baby’s intake of breast-milk.

Some herbal treatments such as star anise are not recommended, because some studies have indicated they can be harmful to the baby.

Dairy-free diets

At any given time, on any breastfeeding forum, you will see recommendations for parents to cut out dairy (and sometimes soy) from their diet to resolve colic.

There is some limited evidence to suggest a dairy-free or low-allergen diet can help reduce the symptoms of colic, and this is certainly true if your little one has a cows milk protein allergy.

However, it is important to remember that the current evidence for rates of cows’ milk protein allergy in exclusively breastfed babies suggests it affects only a tiny percentage. If you are concerned about this your clinician should take an allergy-focused clinical history- it is a more likely scenario if you or baby’s other parent have any atopic conditions such as eczema, asthma or other allergies.

I cannot stress enough how it’s important not to jump to conclusions and start cutting out food groups without guidance from a dietician and without ruling out other causes of baby’s distress first. Going to see a breastfeeding counsellor might be a good first step.

Probiotics 

An emerging area in the treatment of infant colic is the use of probiotics, particularly ones containing the strain L reuteri.

Over recent years there have been several studies with conflicting outcomes, and a recent meta-analysis concluded that they may help with colic. However, more recent studies have suggested probiotics need to be personally tailored to the individual to be effective. Concerns have also been raised about adding bacterial strains into a baby’s developing gut without having a clear understanding of what the baby’s gut bacteria may or may not be missing. We just do not have any research into the long-term safety of using probiotics in young babies. The good news is if you breastfeed your breastmilk contains the absolute best probiotics for your baby.

We are expanding our knowledge all the time in this area, so it is always worth keeping up to date with the research as things can change quickly! I wrote this blog originally in 2016, and I have updated this section three times now.

Cranial Osteopathy

Research looking at the effects of cranial osteopathy on infants is mixed, with some trials showing a benefit and others showing no benefit when compared with ‘sham’ manipulation.

While some parents will say they found osteopathic treatment useful, unfortunately, the evidence around these therapies is fairly inconclusive and it isn’t available on the NHS. On the positive side, cranial osteopathy is a gentle and non-invasive intervention, it doesn’t involve introducing new things into a baby’s delicate gut, and many parents report their babies to enjoy it.

Baby Massage

Baby massage is another common suggestion for help with colic and if I was recommending any intervention to help with colic, this would be it. In terms of its use as a colic treatment, more research needs to be done as the results have been a mixed bag, however, what has been shown is that baby massage is a great way to promote parent-child bonding. This means, even if it doesn’t help the colic, it will help you to cope with it better. Signing up for a baby massage course has the added advantage of getting you out of the house and talking to other sympathetic parents and making friends. All very positive things for your own mental health. It is also a gentle and non-invasive way to soothe a baby, with the added bonus that it gets all that oxytocin flowing!

Block Feeding

One thing most breastfeeding supporters wish they could stop people recommending willy-nilly is the suggestion that “oversupply” is the cause of a baby’s colic, wind or reflux.

Block feeding – where a mother offers baby the same breast for a set number of hours – is an effective technique used to reduce supply in mothers who have an over-abundance of milk. Where oversupply has been identified by a breastfeeding professional, this may help with an unsettled baby.

However, the problem is that the symptoms of oversupply are remarkably similar to the symptoms of shallow attachment. If the baby isn’t attached to the breast deeply enough, they may struggle to handle the flow and splutter, cough, gag and take in lots of air.

Parents who block feed in this situation may start out with a perfect milk supply for their baby’s needs but end up with a low milk supply, simply because the breasts are not being stimulated enough. If you are concerned about oversupply, your best course of action is to seek out an experienced breastfeeding professional to observe a feed and take things from there.

So what works?

In conclusion, the word on the street from Cochrane is, “At the present time, evidence of the effectiveness of pain-relieving agents for the treatment of infantile colic is sparse and prone to bias. The few available studies included small sample sizes, and most had serious limitations. Benefits, when reported, were inconsistent.”

So, if you think your baby has colic what can you do?

1. Look at breastfeeding management, attachment, and positioning

There is some evidence to suggest that making sure a baby is well positioned during breastfeeding may lead to a reduction in colic-type symptoms. There is also evidence for allowing the baby to finish feeding on the first breast before offering them the second breast. So there’s no need to time feeds per breast, and it’s best not to remove the baby from the breast before they decide they are done themselves.

Sometimes a little chat and some work on attachment and positioning with a peer supporter or breastfeeding counsellor can really help.

2. Find experienced breastfeeding support from a breastfeeding counsellor or IBCLC

If simple adjustments do not help, this is when skilled help to assess your baby feeding can be really useful. A breastfeeding counsellor or IBCLC who is skilled enough to look at baby’s suck/swallow/breathe technique, and who can do an examination of baby’s mouth, will be able to talk to you in detail and may be able to pinpoint some things for you to try.

3. The Comfort Cycle

This is my list for dealing with cranky babies in helpful meme form!

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Even if none of these things work, the action of just doing something can help make you feel better about the situation.

4. Talk to somebody

When you have a baby who is unsettled and cries a lot, it can be incredibly hard. It can really shake your confidence in your ability as a parent and affect how you view your breastfeeding relationship.

Talking to somebody about the situation can go a long way towards helping you feel better about the situation, even if the colic doesn’t improve instantly.

So if your baby has colic, and if you just take one thing away from this blog, remember this too will pass. Remember, you are doing a GREAT JOB. Time is the number one treatment for infant colic, and it is nearly always a cure.

If you are struggling with a crying baby and really need to talk to somebody urgently, the breastfeeding helplines will be happy to talk to you.

This blog is not intended to replace the advice of a medical professional, simply to give information for further discussion. Please make sure if you are concerned about your baby to discuss this with a medical professional or a health visitor.

Find me on Facebook! https://www.facebook.com/OxytocinAndOtherStories

*This blog has been substantially updated from an article I wrote for Breastfeeding Support and Information UK‘s blog “Through the Eyes of a Breastfeeding Support Group” if you like you can still read the original here *

Breastfeeding with CMPA

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Identifying CMPA and how to cope if your baby is diagnosed with it

Cows Milk Protein Allergy is a hot topic. Hop onto any online breastfeeding support group, on any given day, and you will find someone asking about whether their baby could have a dairy allergy, or being told their baby might have a dairy allergy. When it comes to colic, reflux, general grumpiness, or a bit of green poo, it seems to be one of the go-to suggestions.

So this is my personal story, and some information about CMPA, covering diagnosis, how to live with it, what it is, and what it isn’t.

What is CMPA?

CMPA stands for “cow’s milk protein allergy” and it is the most common infant allergy in the world. If you look at what the guidance, and some of the research, says it is less common than seems.

Some research suggests:

  • Formula feeding increases the risk of CMPA.
  • 2-7% of formula infants and 0.5% of exclusively breastfed babies are thought to suffer from the condition.

Many people feel these numbers are conservative and research is ongoing. However, I include these figures here to make an important point- often what is going on is a lot more basic, and resolving the issue won’t involve you making huge changes to your diet.  If you are concerned that your breastfed baby may have CMPA, it’s probably a good idea to have a chat with an IBCLC or breastfeeding specialist to rule out other, more common breastfeeding issues, for example, tongue tie, or a shallow attachment.

There are two kinds of allergy response to consider:

  • ‘IGE allergy’ is what people commonly identify as an allergy- in its most severe form it includes anaphylactic shock. Symptoms of IgE allergies include hives, wheezing, swelling, and projectile vomiting.
  • ‘Non-IgE allergy’ used to be called ‘intolerance’ or ‘CMPI’. Non-IgE allergies are delayed response allergies, meaning they can occur up to 72 hours after exposure. Symptoms of Non-IGE allergies include reflux (GORD), eczema and ear infections.

It’s possible for a child to have a combination of IGE and Non-IGE symptoms.

The Breastfeeding Network has a great fact sheet on CMPA here which talks about the symptoms.

CMPA symptoms

BfN CMPA symptoms list

Is CMPA the same as Lactose Intolerance?

I want to shout this from the rooftops. CMPA is NOT lactose intolerance! (more here).

Lactose intolerance is fairly common in adults. It is caused by the body not producing enough lactase to digest sugars in milk. Lactase production declines as we get older, and in some adults, it declines to a level where it is a problem.

Babies and infants normally produce plenty of lactase, which would make sense since their diet is entirely milk. Lactose intolerance from birth is a different condition. It is a very rare enzyme disorder, not an allergy. Lactose-free products are not suitable for anyone dealing with a cows milk protein allergy.

Diagnosing CMPA

My daughter has both CMPA and a soy protein allergy, which was diagnosed late on. Unfortunately, no-one involved in our care took an allergy-focused clinical history which might have speeded up the diagnosis. A’s Dad suffers from a few allergies. We have extensive food allergies on my mother’s side of the family. My daughter suffered from silent reflux, mild- but difficult to treat- eczema, and recurring ear infections. She was congested a lot of the time, so she snored loudly, slept with her mouth open, and had a persistently shallow latch (due to a blocked nose). It was an IBCLC who suggested CMPA to us after I visited her. She was 12 months old. I was slightly desperate at the time due to the fact she also woke up around once an hour (or more) so I was up for trying anything that might help. My husband and I were also concerned we were still medicating her for reflux, and as her eczema only seemed to be getting worse, we decided it was worth investigating it further. I went to talk to my GP.

To confirm whether or not A had CMPA I followed the NICE guidelines which meant removing all milk products from my diet for at least 4 weeks. An elimination diet like this is considered the best way to confirm allergies in infants. The reason for this is that tests to confirm allergies in babies are unreliable, and they will not identify Non-IgE allergies.

I also made sure I didn’t substitute my cow’s milk products with soy products, so I avoided soya milk, yogurt, and cheese. I had learned a large percentage (somewhere between 20 and 60%) of babies with CMPA will also have a soy allergy and I was keen to not confuse things with the elimination trial. This was my personal choice, it certainly isn’t a blanket recommendation, but it is something to bear in mind and discuss further with your health care team.

I carried on breastfeeding while I followed the elimination diet, it’s rare for a mum to have to stop breastfeeding if CMPA is suspected.

We saw an improvement in A’s symptoms within a few weeks. After six weeks I “challenged” to be sure we had an issue with CMPA- this involved simply having a glass of milk and watching for 72 hours to see if her symptoms returned, which they did.

In cases of children with severe allergies, this process must be managed under medical guidance My daughter didn’t have a severe allergy so we could do this at home without supervision- do check with a health care professional if you are unsure.

Once you have confirmed CMPA it is important to have some input from a dietitian (especially if the baby is on solids). It is also really important to consider how you will replace essential nutrients which may be lost from your diet if you eliminate milk longer term. More on this here.

“What do you mean there’s milk in the pickled onions?”- Living with CMPA

I quickly had to get to grips with checking labels! I’ve found milk in wine, crisps, chorizo, bread and yes- pickled onions! I quickly learned you cannot assume something will be okay.

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This wine reduced me to tears one Friday. Proof– wine can contain milk! So check the labels on everything!

In the UK we have strict labeling requirements and common allergens need to be highlighted on the label in bold, which makes things easier for sleep-deprived parents!

Sticking to chain restaurants when eating out made our lives easier. Big chains tend to take allergies seriously, and often have a special folder or menu for people with allergies. All places which serve food have to be able to tell you (at least verbally) what allergens their food contains. Zizzi, Pizza Express and Pizza Hut all now offer vegan cheese and have dairy free pizza bases. Who would have thought you can still go out for pizza and be dairy free?

Make your server aware you have a milk allergy so they can take care not to cross contaminate food as they prepare it. It is always worth asking “what’s in that?” rather than just “what is dairy free?” You don’t know what the person serving you understands as dairy. Many people assume eggs are dairy so they may be excluding things from the menu unnecessarily or worse, may assume something isn’t dairy when it is.

I also always make sure I take ‘safe’ snacks with me or a packed lunch for Amy just in case if we are going out now she eats solid foods and a small pot of alternative milk for me.

The thing about cheese and chocolate

Good news- there is amazing dairy free chocolate! Most dark chocolate is dairy-free and many are soy free too. There are also specialised “free from” chocolates like “Moo Free” and “Booja Booja” (who do the most amazing ice cream too)!

I’ve personally found vegan cheese can have a bit of an aftertaste, as well as a strong smell! If you are going directly from eating proper cheese to ‘chease’ it can be a shock! I found after giving up on cheese for a while I was happier with the vegan stuff. The major supermarkets all seem to have a wide variety of dairy and soy free cheeses which makes life a lot easier. Currently, the ASDA cheeses are my favourites, they have a mozzarella alternative (which is also available at their pizza counters!) and a cheddar which are pretty good.

The bad news? I, unfortunately, didn’t lose weight on a dairy-free diet after I discovered loads of biscuits were dairy free…

Cookies on Bowl

May Contains- to eat or not to eat?

One thing which can be confusing when you first go allergen free is the labeling on products like “may contain milk” or “not suitable for milk allergy”.

Now, this looks like it isn’t suitable if you are eliminating milk, doesn’t it? However, what may be useful to know is that a ‘may contain’ label isn’t a legal requirement. Any food you buy which is pre-prepared, in a café, or restaurant is a ‘may contain’ even if it doesn’t say this. If you still prepare dairy foods in your own kitchen means everything you make is a ‘may contain’! Avoiding ‘may contains’ can make eliminating dairy or other allergens difficult. The risk of reaction from these products is small, so many parents of children who do not have life-threatening reactions decide not to avoid ‘may contains’.

Adjusting to your new normal

It can feel overwhelming when you first go dairy free. That’s okay. It’s not selfish to feel fed up about not being able to have cheese or to feel upset because OAT MILK IN YOUR TEA IS NOT THE SAME. I get that. It does get an awful lot easier as time passes.

It helps to seek out ongoing support, either in real life or online. There are some fantastic breastfeeding support groups on Facebook (https://www.facebook.com/groups/breastfeedingwithCMPA/ is my favourite and you will often find me chatting there). You can get recipe ideas, tip-offs on CMPA friendly treats and generally have a rant if you need to.

It probably took about 6 weeks to come to terms with my new diet, and it was all worth it in the end. The end result was a much happier tot! I’m so grateful I was able to breastfeed her. My milk means I have never worried about my daughter’s nutrition or tricky prescription formulas and for me, that all makes it worth giving up cheese.

This blog is not intended to replace the advice of a medical professional, simply to give information for further discussion. Please make sure before making significant changes to your diet or your child’s diet to discuss this with a medical professional or a health visitor first.

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More information on CMPA

Finding impartial information on CMPA can be difficult. Unfortunately, this is one area where industry (namely infant formula companies) are very heavily involved. The conflict of interest is clear so I won’t go into too much detail here other than to say the below resources will provide reliable, independent information, free from industry bias.

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*I originally wrote this article for Breastfeeding Support and Information UK‘s blog “Through the Eyes of a Breastfeeding Support Group” and you can still read the original here*

“We don’t need to promote breastfeeding in western societies we need to enable it”- Maureen Minchin