Finding a specialist for recurrent mastitis

[NorthernLass213]

Hello, my son is 8 week old and was born at 36 weeks, so 4 weeks corrected. We had a struggle to start breastfeeding and I pumped bottles in the beginning and added formula to combi feed until he was strong enough to do full breastfeeds.

long story short I’ve had mastitis now 3 times (so I’ve only been off antibiotics about 12 days since he’s been born). I’ve also had anti fungal as had thrush when on the antibiotics.

was referred to the breast clinic to rule our inflammatory breast cancer and abcess but nothing there. The doctor said if he could rule out cancer and abscess that’s basically all he could do. Couldn’t provide reassurance it won’t happen again, or provide insight into what’s causing it. It’s not clogged ducts since the first time as I don’t have any lumps and it starts in the same spot each time. He thinks it’s just a stubborn infection that will go away with prolonged antibiotics.

im wondering if there is any medical professions that also specialize in breastfeeding? The lactation consultants can’t seem to give any physical or medical advice and the doctors can’t seem to give any insight into breastfeeding. I’d like to continue breastfeeding (didn’t realise how much I would grieve it going to formula!) but I can’t continue being sick every two weeks as I have a toddler as well. Everyone says I should just go fully to formula and move on but I’m wondering if there is another way. I’m between Manchester and Leeds but willing to travel to see a specialist!

Here are some pics of the last time

Anyone?

I went through this a long time ago so can't say what help is available now but just wanted to sympathise.. I was advised to persevere so did.. your baby has had the colostrum, the first and best bit.. be kind to yourself.

@ohthejoys21 did it keep coming back or did anything shake it!? How many times did it come back? Mine goes for 4-5 days after antibiotics then comes back

I wonder if because you are BF they are limited what antibiotic’s they are giving you and it’s not clearing the infection completely. It’s just lurking.
Is there a chance you could take something stronger, pump and dump, and then try and restart?

Total game changer for me- you may laugh at this but seriously buy some dark green cabbage, a whole one- the darker leaves work best. Tear one off, squash the main vein slightly with a rolling pin to get the juice flowing don’t mush it, slight bruise only, then put it in your bra on your breast. It’s amazing, worked for me every time I felt it starting- getting warm/hot, red tracking and feeling solid, always left boob to the arm side of my nipple . I also found leaning in a sink full of warm water and massaging from body to nipple after a feed helped. Tell us how you get on. Luckily mine was never bad enough to need antibiotics. Change the cabbage leaf every 5 hours or so, it will start to smell a bit stuffy

Oh OP, I really feel for you! What an amazing job you've done to keep going through that. People think they're being helpful saying you should just stop but actually I needed people to say that I could carry on even though it was so hard and painful.

I too had a difficult start to breastfeeding with 8 weeks of terrible pain from a tongue tie and mastitis. My DD is now nearly 2 and we are still going and no plans to stop any time soon. However, for a few months recently I was struggling with mastitis and milk blebs again. So over the last couple of years have done a shed load of research into this that may help you!

First, are you aware of the Academy of Breastfeeding Medicine protocols? They updated their mastitis spectrum one in 2022 and the advice is v different to standard GP/NHS advice i.e. ice, antiinflammatories, v gentle lymphatic massage NOT heat, vibration, deep massage.

https://www.bfmed.org/protocols - number 36.

I kept many flare ups at bay without needing antibiotics (though had antibiotics the first time and then again in January when I was very run down) by following this advice. This is your first aid effectively.

Now in terms of root cause, can you see someone properly trained in tongue ties? (Midwives, health visitors and GPs are not.)That is a common cause of mastitis because the milk transfer isn't effective enough. There are good tongue tie practitioners and bad ones, we unfortunately saw a bad one and as a result my DD is still restricted, hence ongoing issues. It's really important that the practioner works by not jumping to a release straight away, instead solving tension issues first so that the release can be effective. They also need to follow up with you afterwards. I recommend Faye at Rockabye Hub in Chester or Kellie at Pitter Patter Tots in St Helen's.

Then there are also things you could try for longer term prevention. I also now take 10g of soya lecithin a day and that seems to stop me getting milk blebs. When I tried to taper I started getting symptoms again straight away. I also take ligilactobacillus salivarius probiotics (not so sure about the effectiveness of that). These are both mentioned in the ABM protocol I linked.

To answer your original question about doctors trained in lactation and who are also medical, I found two: Sharon Silberstein in London https://www.instagram.com/breastfeedingdoctor.uk?igsh=ZDlzMW5xcXpjeWV6
and Justice Reilly in Scotland https://www.instagram.com/breastmed?igsh=ZjB1Y2l2ejhjMHg3 .

I didn't end up seeing them as my symptoms eased and I saw Kellie about the tongue tie instead.

More than happy to talk more about this - it's a subject I feel super passionate about and so angry about how poor the support is. A lot of the things I've suggested cost money and it breaks my heart that many people will not have the privilege to access it and are just given misinformation.

@Mielbee wow thank you!! Incredible info. I should say he was diagnosed with a tongue tie at 5 weeks and it was snipped at 6. My latest bout of mastitis was less than a week post tongue tie revision.

will take a look at the recommendations! It’s clear now because I’m on strong anti biotin’s but worried it will start again xx

It came back like yours around a week after end of antibiotics. I persisted as I had to go away on business and was determined to feed till then. You have my sympathies it was a nightmare.

There are infant feeding specialists you can see - it might have been them you saw for the tongue tie?

How frequently are you feeding? If you feel at all uncomfortable/overly-full between feeds, can you try hand expressing just enough to relieve the pressure? This will help to ensure your comfort and regulate milk production hopefully without telling your body to make even more milk.

Have you had cultures done so they know you have the best antibiotics? It sounds like non of your courses have been long enough, if they have been the right drug.

yes to lecithin, yes to lymphatic drainage with gentle reverse pressure drainage.
Sensible to get the TT checked again although many babies do fine with a TT and practitioners who divide too deeply cause on going problems too so they can be tough to unpick.

Huge yes to getting your latch looked at. A change in your feeding position on that side could make a huge difference. Copy the position from the good side and just move baby over (like a type write tip section ifswim) or bring baby from under breast at a little hand pointing to 6 kind of position. It isn’t just the mouth - it can be neck stiffness on baby, preference for position or our tiny variations that make a huge difference.

the initial symptoms between infectious and non infectious can only really be seen in response to self care - infectious continues to worsen. Non I fe this can give aches, temp, red mottled breast and pain. Be hyper vigilant for the old bruise feel or milk stasis and take any inflamed, cool breast and pump/feed in a range of positions to get the milk removed. If symptoms ease it’s not infectious (though can still become infectious). There are women taking lots of antibiotics when it’s actually an immune response.

check pump size too as can contribute if too small.

And non need to pump and dump for stronger antibiotics - the only ones you would not usually feed on are not the best ones for mastitis.

I've had mastitis many times and found that Lectithin tablets really helped. My local breast clinic had recommended them. Apart from that the only other cure was antibiotics and regular feeding.

Ah ok! I think that explains it then! Unfortunately the snip isn't the silver bullet I thought it would be, so it takes a few weeks for them to learn to use their tongue effectively afterwards. Have you been given any follow up and exercises? That is absolutely key and the fact we weren't is why DD is still 50% restricted and we've continued to have problems. Wish I could go back in time!

I'd get in touch with your local NCT breastfeeding support team as they have a wealth of knowledge of mastitis. Lymphatic drainage massage daily is very good. I'll post a link. https://www.instagram.com/olivia_lactation_consultant/reel/CjAbmBnDz8T/

You can also find someone on IBCLC website

Well done for sticking with it. I also had a premmie and started with pumping. Wasn't off the top ups and onto full boob until 12 weeks as tongue tie wasn't picked up. You're doing so good!

Love Olivia's IG account!

This is left field but may be worth a try. When health visitor thought I might be starting mastitis many moons ago ( saintly motherly woman who even collected prescription for me as my husband was away), I got in the bath with the jacuzzi streams on and directed them at my sore boob. Did that six times over course of a day - seemed to work and didn't need antibiotic in end. A friend who had been given a machine to turn your bath into a jacuzzi plus an old fashioned Clarins breast massager(!) recommended this to me.