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

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…

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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.

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

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