Things I have learnt (the hard way) about breastfeeding...

[Knomester]

A friend who has a 5 month old baby recently told me that if she decided to have a second child it wouldn't be the thought of labour that daunted her but the first few weeks of breastfeeding and, even after a horrid labour and emergency c-section, I'm inclined to agree :-)

Baby Knomester and I haven't had the easiest of starts when it comes to feeding and we're still not out of the woods after 11 weeks, but we've learnt a few things along the way which I thought might be of use to other new mums facing similar problems with breastfeeding. We've had to battle to get the treatment we need and to see the 'right' people, but we're here to tell the tale and still (for the time being at least) exclusively breastfeeding!

1. Pain during and after breastfeeding

If you have pain when you're breastfeeding it might not just be because baby isn't latched on right, there are other reasons and sadly, for some mums breastfeeding isn?t pain-free. Time and time again we're told that if it hurts you're doing something wrong - usually that the latch isn't right - but it just isn't true. There seems to be a wall of silence about the problems women face when breastfeeding which is incredibly sad... We choose to breastfeed because we think it's best for our babies, but it's not easy for many women and sadly we feel like it's our fault or we're doing something wrong when we encounter problems.

Of course checking you?ve got a good latch is the starting point and it?s not an easy thing to master for some mums and babies, but (despite what all the books, midwives and health visitors seem to tell you) there can be other reasons for the pain. We were seen by at least 5 different midwives, BF counsellors, etc and told that Baby Knomester's latch was absolutely fine, but still I was in absolute agony at each feed and cried through all our feeds (not just the first 20 seconds!) for weeks until I left a tearful message for Clare Kedves at King?s who saw me the next day.

My pain was caused by a few things: Baby Knomester had a posterior tongue tie (not picked up until 5 weeks), I had open wounds on my nipples (probably caused by the tongue tie), I had a staphyloccocus aureous infection (bacterial) on the wounds and I had thrush which had progressed to my milk ducts. Sadly, all of these seem to be fairly common, but accessing the right information, finding GPs who could properly diagnose and getting the correct treatment can be seriously hard work.

2. Tongue Tie

A tongue tie is where baby?s tongue is attached to the bottom of his/her mouth by a membrane. Not all tongue ties cause problems with breastfeeding, but even a posterior tongue tie (where it?s just attached a little at the base of the tongue) can cause untold pain and nipple damage to mum and can mean that baby has difficulty feeding.

There are a couple of good photos and explanation about the symptoms on this website which helped me decide that Baby Knomester may have a posterior tongue tie: http://www.tonguetie.co.uk/

There are some excellent threads on tongue tie with lots of mums? experiences on the forum. The most recent one started by Moos is here: http://www.eastdulwichforum.co.uk/forum/read.php?29,568323

Sadly King?s don?t check for tongue tie as a matter of course when babies are born. I know what to look out for next time (if there ever is a next time?!) but I?d suggest that if you or baby have any of the symptoms that you call Clare Kedves at King?s (she works on Tuesdays and Wednesdays but you can leave a message any day for her to pick up when she?s at King?s on a Tuesday) and ask her to check. The procedure to release the tongue tie is very simple (and not traumatic for baby) and carried out by Dr Patel up at King?s. Afterwards you will have to breastfeed every 3 hours day and night for 5 days and massage under baby?s tongue ? please please please make sure you do this as baby?s tongue tie can grow back (as Baby Knomester?s is doing ? we?re back on massaging several times a day 6 weeks on).

The earlier a tongue tie is picked up the less trauma for both mum and baby so please don?t worry if you think you?re wasting people?s time or being a pain (like I did). I was made to feel like a neurotic, over-panicking mum by several GPs, but luckily my midwives kept me on for a month and were incredibly supportive. But sadly, I do feel like my first few precious weeks with Baby Knomester were seriously marred by the undiagnosed tongue tie and resulting problems?

3. Thrush - Diagnosis

Oral thrush in babies and thrush on mum's nipples / in mum?s milk ducts is, from what I can tell, fairly common and difficult to get rid of. Added to that, many GPs (I've seen 5 different GPs about it as well as the wonderful team up at King?s) don?t seem to (a) recognise it or (b) know how to treat it properly.

We self diagnosed ourselves with thrush when Baby Knomester was about 10 days old after reading lots on the internet and chatting to other mums with experience of it. Sadly the first 2 GPs I saw refused to diagnose thrush and wouldn?t give us the medication we needed. The 3rd GP (at the same surgery) eventually prescribed what I asked for after I made a verbal complaint about the previous 2 GPs I?d seen.

The problem with oral thrush in babies is that it can be almost symptom free and therefore difficult to diagnose. There may be white patches on baby?s tongue or in baby?s mouth, but baby may just have a white tongue ? a bit like it looks straight after a feed when there is milk residue in baby?s mouth. Apparently many moons ago it used to be known simply as ?white mouth? which makes sense.

In mums symptoms can be more severe. Look out for flaky or red, or shiny skin on nipples (although I had none of these first time round) and deep stabbing pains from the nipple area into the breast ? like someone sticking big needles into your breasts. The pain is constant and isn?t just there during feeds.

Whatever you do, don?t just ignore it as it can get worse very quickly. I was daft enough to wait over a weekend to see a GP instead of calling Seldoc ? a mistake I wouldn?t make again!

4. Thrush ? Treatment

The best advice I found was from the Breastfeeding Network:

http://www.breastfeedingnetwork.org.uk/pdfs/BfN_Thrush_leaflet_Feb_2009.pdf

In short, to be sure that you get rid of thrush (based on this advice and that offered by King?s and Clare Kedves) I found that you need to do the following:

- treat both mum and baby simultaneously (or you?ll pass it between you)

- apply daktarin cream (micanazole 2%) to nipples after each feed

- apply daktarin gel (micanazole) to baby?s mouth after each feed

- mum to take flucanazole ? loading dose of 150mg-300mg on day 1 and then 100mg twice a day for 10 days

- sterilise muslins, dummies, teats, towels, bras, etc in Milton and wash at 60C

- wash baby?s hands regularly

- wash your hands after feeding or touching your breasts or baby?s mouth with anti-bacterial handwash

- keep doing this for at least 7 days after symptoms disappear

Don?t use lansinoh cream or apply breast milk to your nipples as they create the perfect environment for thrush to breed.

We have been using the daktarin for nearly 9 weeks now and have had 3 courses of flucanazole but I still wouldn?t say that we?re 100% thrush-free?

5. Open Wound Healing

Like many other mums, I had large open sores on my nipples which bled and would not heal. Each feed reopened the wounds and they were impossible to heal. Expressing just made them worse for me. The only thing that has helped has been the Novogel pads (Novogel circular pads 7.5cm -http://www.fordmedical.co.uk/id4.html) which promote open wound healing by allowing the wounds to heal from the bottom up.

I was told many times to keep my breasts open to the air to let them heal, but this was actually making them worse. There is credible evidence that the best way to heal open wounds (on nipples or elsewhere!) is by moist wound healing. There is information here: http://www.breastfeedingnetwork.org.uk/pdfs/moist-wound-healing.pdf

At one stage I thought one of my nipples would never heal as there wasn?t much left of it at all. Although I?m not quite healed yet, after 5 weeks of wearing the novogel pads the open wounds have healed to the extent that they no longer bleed, the sores are no longer what I would call ?open?, I can touch them without screaming (!) and I?m hoping (!) that eventually the skin will grow back.

6. Other bacterial infections

We all carry bacteria on our skin which is harmless, but when you have open sores then the bacteria can cause untold problems. There are bacterial infections which are common in breastfeeding mums with cracks and sores on their nipples and which need to be treated with antibiotics to clear them up and allow the skin chance to heal.

I had one infection ? staphylococcus aureous ? which was picked up by a swab done by one of my GPs and treated with strong antibiotics. The only symptom I had to show that there was this bacterial infection (in addition to the other problems) was that one of the open sores had yellow puss (gross sorry?!) from time to time.

If you are having any pain and have open sores I would suggest asking your GP to do a swab. It won?t necessarily pick everything up (they rarely pick up thrush) but it should tell you if you have a bacterial infection which needs antibiotics.

WOW...that was longer than I intended! If any of this helps even one person then the time it has taken me to write it over the past week in between feeds and playtime and Baby Knomester's current daytime-sleep-strike then I will be very happy :-)

[GinaG3]

Well done you, thats a good read.

I'm a breastfeeding counselor volunteering in Peckham and Dulwich BF'ing cafes. At Peckham we see untold amounts of tongue tie and it can be so frustrating to see babies try to latch. i always find myself wondering what more I can do to help. There needs to be change somewhere, whether it be babies being checked at birth, more midwives, HV's and GP's being trained in tongue tie and the division too.

Just today we diagnosed a 10 week old baby with posterior tongue tie, that had barely been noticed. It should not take this long! A lot of women give up feeding around 6 weeks, one of the biggest reasons being undiagnosed tongue tie causing problems. Then mothers suffer the guilt etc etc when the problem could of been rectified and they could of continued to feed for months or even years if they desired. I find the whole issue really interesting and am waiting to see if I can do more work with women and babies in this position.

I now wonder if a very small posterior tongue tie was the issue with my daughter not being able to latch for 2-3 months. Regardless though, I am still breastfeeding at knocking on 2.

[Knomester]

Hi Gina

I forgot to add to my post that the BF Cafe in Peckham is the best one to go to if you're having problems as it seems that you're the only ones to pick up on the tongue tie problems! I've been to see you all there a couple of times and made to feel very welcome and supported.

It turns out that it is more than likely that both me and my mum also had tongue ties - my Granny struggled to feed my mum and my mum struggled to feed me (but not her other 3 babies). Both my mum and I have had problems with our jaws all our lives (operations for both of us) which Clare Kedves says is a sure sign of a tongue tie. I'm hoping to take Baby Knomester to see an osteopath soon as he seems to struggle with opening his mouth wide enough to get a good latch now...

[Fuschia]

KM: hats off to you for hanging in there through so much!

[Knomester]

Thanks Fuschia - very sweet of you to say so! I am sure there are other mums who have it much worse and might not have had the support (or tenacity...!) to get the right help. I'm just sad that I haven't found BF an enjoyable or bonding experience...

[Fuschia]

Knomester Wrote:

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> I'm just sad

> that I haven't found BF an enjoyable or bonding

> experience...

Hopefully you have that yet to come!

[anna_r]

Wholeheartedly agree with everything you've written...having had very similar experience.

A couple of things to add:

claire recommends you try a special diet when trying to get rid of thrush, which includes cutting out sugar, bread And lots more. I think it's pretty much impossible to cut these things out entirely when you are an exhausted breastfeeding mum. However I did cut out the most sugary things in my diet namely regular coca cola and dextrose energy tablets and I think it might have made a little bit of difference. I also started drinking yakult which I am now addicted to!

Another type of bacterial infection I had in addition to staph aureus was group 3 staph. The cocktail of antibiotics I was first put on I was told was tough on your stomach/digestive system. As it turns out I was fine but my lovely calm daughter turned overnight into a screaming nightmare. I told the dr and as soon as we switched to a different antibiotic she got better.

GPs often do not know that you need these high dosages of fluconazole for getting rid of ductile thrush. In my case I had to tell my dr how much to prescribe me. It is different to that for other types of thrush.

[Fuschia]

I am not sure oral fluconazole is even licensed for use in bf women..... drs do prob need pressure put on them to prescribe.

I had a staph aureus infection in one breast (mastitis) about a year ago which required weeks and weeks of antibiotics and attendance at Kings to have it drained.

Def don't suffer in silence!

[Knomester]

Flucanazole isn't licensed for BF women as far as I'm aware, but as I understand it, it is licensed for babies and the amount that passes into your breastmilk is less than the amount licensed to give directly to babies.

My GPs wouldn't prescribe the amounts needed at first so I bought a flucanazole (oral thrush tablet) over the counter as my loading dose until I could get to see another GP.

I also cut out sugar, booze, wheat etc (as far as possible) for a while anna_r - I'm not sure what difference it made, but I felt I was doing something! As a friend said last week, if you followed the diet 100% you would ended up suffering from severe malnutrition!

I also took strong acidophulis (sp?) suitable for BF mums and was on painkillers (diclofenac and paracetamol) until a couple of weeks ago.

[Fuschia]

Knomester Wrote:

-------------------------------------------------------

> Flucanazole isn't licensed for BF women as far as

> I'm aware, but as I understand it, it is licensed

> for babies and the amount that passes into your

> breastmilk is less than the amount licensed to

> give directly to babies.

>

> My GPs wouldn't prescribe the amounts needed at

> first so I bought a flucanazole (oral thrush

> tablet) over the counter as my loading dose until

> I could get to see another GP.

>

Yes, I'm not saying it's not the right treatment, just that many GPS won't be knowledgeable!

#

Useful info here that can be printed out: http://www.breastfeedingnetwork.org.uk/pdfs/BfN_Thrush_leaflet_Feb_2009.pdf

[Moos]

Knomester Wrote:

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I haven't found BF an enjoyable or bonding

> experience...

That is indeed sad, but to echo the spirit of what Fuschia said, I found feeding my elder son very difficult and discouraging, and swore on a daily basis for weeks that I'd stop tomorrow. But things changed, and it became easier and less of a chore. The last feed of the day before his bedtime in particular became a very relaxed and happy experience. I hope it will too for you!

Thanks so much for this thread - invaluable.

[MrsP]

Wow what a brilliant and honest thread about breastfeeding. I am completely with you on moist wound healing and had a similar experience with bleeding nipples never healing when exposed to air. Breastfeeding can be incredibly difficult and is not always a warm, cosy experience. I found the experience quite parasitic and emotionally difficult to deal with, and felt so unsupported I didn't breastfeed my first child longer than 4 weeks. However, I persevered with my second child and ended up doing it for eleven months. I felt very guilty for not breastfeeding my daughter and now believe that mothers should be able to weigh up the pros and cons of continuing to breastfeed in a honest and guilt free environment. I wholeheartedly think there should be more support available, breastfeeding is not easy!!

[Fuschia]

KM: have you tried bf in the bath? I have always found it the nicest place the days it all got too much.

[Countjc]

KM:

You are amazing and thanks so much for this thread. I wish it had been around before I had my baby.

My experience is on another post but just one thing to add is that breast thrush can stop the nipple tissue from healing properly and growing back. Like you I had it quite severely and right up in the milk ducts. I ended up just expressing after the tongue tie op as there was still so much pain but the tissue did not heal up and has still not done 3 months after stopping expressing. I saw a GP who specialises in dermatology and she was concerned that I may not be able to breast feed another child and should have stopped feeding/expressing sooner. I think maybe I am an unlucky 'one off' but if you are suffering from breast thrush, it might be worth getting a GP to assess how much damage has been done.

GinaG- I wish I had come to peckham bfeeding cafe. Would love to hear if you have experienced successful stories 2nd time around after tongue tie etc as although quite a way off thinking about no. 2 it is something at the back of my mind.

[bli]

Countjic

As I mentioned on the other thread, I've had three children, all with tongue tie. I was very worried about it when planning number two, but as a result I researched it, got a diagnosis within five minutes of his birth and was better prepared to deal with the difficulties while waiting for the snip. His tongue was sorted at 3 weeks, though this did involve a lot of jumping up and down and crying in order to get a quick referral. Baby three was similar, and again required a massive amount of effort from myself and midwives to get through the restrictive appointment system... but it happened and was far less traumatic and sooner than with my first baby.

I have to say if I was doing it again (which I'm not!) I would have the number of a private lactation consultant who will snip at home - have heard of them but don't have a name. Even just as a backup if can't get in within good time to Mr Patel's clinic - it really did seem to make a huge difference to feeding the earlier the tongue tie was sorted. But yes, I would say I was a sort of success story with tongue-tie in subsequent children even though yes they've all had it...?

On a less positive note though, it wasn't the tongue tie that did me in last time, it was having breast thrush at the same time. It finally cleared up after about 10 weeks of fluconozale for both me and baby, daktarin regime etc plus the strict and depressing anti-candida diet for 9 weeks. Unfortunately there's no way I'd go through that again for so long - so would be easier on myself in terms of insisting on breastfeeding no matter what. And I'd dose up on acidophilus pre-birth!

Knomester - am sure this thread will be very useful to others, well done getting it all down and for dealing so well with it all.

[buggles]

Bravo Knomester and Anna_r - two extremely tenatious and committed BF ladies who I have the pleasure of calling my friends! Well done all for spreading some truthful and incredibly helpful information about BF rather than the limited information we are given in pregnancy.

I have nothing much to add as it's pretty much been said above. I had my baby a few weeks before K and on the same day as Anna and was lucky not to have any of the pain that they suffered from (I seem the exception to the rule as most of my friends were in varying stages of agony at the beginning). I don't know how they did it and have nothing but respect for them. However my LO did have oral thrush (which never made it to my nipples thankfully) so I had to go through the Fluco rigmarole myself and it is frustrating that so many GPs are so underinformed (and one delightful locum told me to just 'give up BF for a few weeks' despite the fact I was not in pain and neither was my LO!). Informed doctors are especially crucial in a population like ED. My big learning is, if you have antibiotics in labour (which I did due to an emergency c-section as well), take acidophilus and Yakult/Actimel or equivalent beforehand and afterwards to try and insure against thrush - I wish someone had told me this going into my induction!

Knomester - I am crossing my fingers you get the lovely bonding experience soon - you really deserve it. Hope you at least get the occasional warm glow for knowing you have already done a hell of a lot for Baby K :)

(edited for typo)

[Countjc]

KM: just thought of a few other things that could help on the checklist.

Tongue tie symptoms:

Baby fighting to latch on- windmilling arms in frustration and crying whenever put into feeding postion.

Baby failing to thrive despite feeding regulalry

Baby feeding for v. long periods of time- sometimes over an hour.

Baby v. dribbly during feeding

Windy baby- OK so most babies are but as a result of the tongue tie they guld lots of extra air down so often scream a lot after feeding.

Buggles- great point about the antibiotics. I wasn't aware I had even been given any after my C-sec until a few days later.

Also taking antibiotics for mastitis can lead to a viscious cycle as these enable the thrush to thrive again. I also found that my baby was much better at unblocking my milk ducts with mastitis but then I would catch thrush again from him - this was before I knew about the strict routine to follow.

I also gave him some probiotics in his milk to try to help him fight it- you can get them from health matters.

Bli- thanks for the reassurance and also for all the advice you gave me back in the early days for fighting the blessed thrush.

Sorry for rambling on folks but these posts the last few days has really reminded me what I went through and it sounds like lots us have had a rough time. Really hope that all these tips can help others out.

[MrsLL2b]

Thanks so much for taking the time to do this to benefit the rest of us. My baby is due in the next week and I am hoping to breastfeed but I am worried about the problems that can be encountered. I will be bookmarking this thread as a go to guide in the event that I do suffer any of the above.

Thanks again and well done for persisting through all occur above. I hope your problems clear up once and for all soon.

[littleEDfamily]

Just to add my two bob worth and say you ladies are amazing having endured what you have.

The one thing no one told me about breastfeeding was that in the days straight after the birth you might get some quite powerful contractions (like labour!) when feeding. Apparently it gets worse with each baby as the uterus has to work harder to shrink back down. Although I am one of the fortunate ones with regards to b'feeding, I wasn't prepared for this and was really disappointed by how little I enjoyed it initially because of this. (but in grand scheme of things, this sounds minor!)

[ryedalema]

Mmmm - I had this. Pretty uncomfy for a while. The doc gave me some quite strong painkillers (which I was too nervous to take admittedly) but they did die down after a short while.

littleEDfamily Wrote:

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> Just to add my two bob worth and say you ladies

> are amazing having endured what you have.

>

> The one thing no one told me about breastfeeding

> was that in the days straight after the birth you

> might get some quite powerful contractions (like

> labour!) when feeding. Apparently it gets worse

> with each baby as the uterus has to work harder to

> shrink back down. Although I am one of the

> fortunate ones with regards to b'feeding, I wasn't

> prepared for this and was really disappointed by

> how little I enjoyed it initially because of this.

> (but in grand scheme of things, this sounds

> minor!)

[Knomester]

Thanks for all the lovely supportive replies :-)

I didn't realise I might have been given antibiotics when I had my c-section. Noone told me and to be honest I wouldn't have thought of checking my notes (in my delirious state!) for something like that. If I'd known I could have, like Buggles said, taken preventative measures as I am prone to thrush when taking antibiotics normally... Another lesson learnt!

Countjc - It sounds like you went through hell. I'm amazed how well you did but really sorry to hear about the potentially permanent damage...

[Saffron]

I didn't have candida, but I did have other problems. The shape of Little Saff's mouth gave me very bad bruises. And I had/have Reynaud's phenomenon in the nipples. The pain was very similar to what you describe as thrush, but it is not candida infection (so no amount of antifungals would have helped). Probably the pain from bruised nipples was setting off the Reynaud's phenomenon -- basically a tiny muscle spasm in the capillaries supplying the nipple. It felt like terrible stabbing, shooting pains. I got lots of well-meaning but totally wrong advice about soothing the nipples with cold packs and cabbage leaves. Not only was the pain way beyond mere mortal cabbage leaves, cold things made it worse to the point of tears. I couldn't understand why the things that seemingly helped everyone else didn't help me!

When the bruising eventually healed and Little Saff's latch improved, the Reynaud's episodes became fewer and less painful. I still have them occasionally, but they mostly just cause discolouration. It was a very slow road though. The initial damage to my nipples in our early days of nursing probably sensitised the nerves and made the Reynaud's worse. I was using nipple shields off/on for 3 mos, and wasn't pain-free till about 5 or 6 mos.

Acupuncture was helpful, as was keeping my nipples warm, not getting chills (ha! try that with a winter newborn when the gas heating keeps going out!!). I also had a great lactation consultant who helped me find more comfortable positions for nursing Little Saff and gave me lots of reassurance.

My GP didn't know you can get Reynaud's phenomenon in the nipples, and my HV didn't even know what Reynaud's is. I'm not downing them in any way (hey, they can't know everything). When I explained the problem, they were sympathetic/supportive. But if I hadn't done a little research myself, I wouldn't have known what the problem was. Also, if anyone reading this has Reynaud's phenomenon very bad, there are drugs to help, and they are ok for bfing. I was lucky that I didn't need drug treatment.

Well done everyone for persevering!

xx

[Knomester]

Saffron - I've read about Reynaud's (sometime during my hazy desperate search to find out what on earth was going wrong with our breastfeeding...) and wondered abot it because I also get a whitening of my nipples after feeds, particularly if Baby Knomester does a long feed. But I don't (at the moment) seem to have any of the other symptoms.

It sounds like you really went through the mill with it all... Amazing that you persevered so long!

Great that you were supported by HV and GP too. I really wish I had seen a GP at the outset who knew something about breastfeeding issues - the first 2 I saw had never seen breast thrush or oral thrush in a baby. They didn't want to look in Baby Knomester's mouth and only treated us both because I insisted. I just wish I'd been even more forceful than I was (easy to say, but not so easy to do when you're tired, emotional and in a lot of pain!).

[charlottep]

Goodness Saffron, that is really enlightening - i had very white nipples and unbearable nipple pain in the cold with my second child - i put it down to thrush and couldn't work out why the treatment wasn't working. That explains a lot! I was also ridiculously intolerant to cold during that pregnancy and my fingers were often white.

It's quite frustrating that these things aren't more consistently picked up. Fortunately i still managed to breastfeed number 2 successfully although not outside so much because of the draft!

[Knomester]

I just thought I'd give an update so that anyone who has problems like I have had can see that there is light at the end of the tunnel...

Baby Knomester was 12 weeks old last Monday and I currently do not have one single open sore or crack :-) The skin hasn't completely regrown yet, but it's getting there slowly. The thrush symptoms have (fingers crossed!) also subsided. All of which is making BF a much easier and less painful process.

I was chatting to my husband last night about the little things that make me realise how far I've come - I can wear more structured bras, wrap a towel around myself after my shower, cuddle my husband (!), wind Baby Knomester over my shoulder - examples of things I wasn't able to do for weeks and weeks, even when taking lots of painkillers.

I'm hoping we're on the home straight now...