Amy's story - Breastfeeding and MS

This week I’m talking to Amy Winterbourne, a mother of two from Watford, about her experience breastfeeding after being diagnosed with multiple sclerosis (MS). Amy shares her journey of breastfeeding her eldest son, William, until he was two and a half, and how she weaned him gently during her pregnancy with her younger son, James. She then delves into her MS diagnosis when James was nearly one, describing the initial symptoms, the process of diagnosis, and her concerns about continuing to breastfeed while undergoing treatment. Despite initial advice to stop breastfeeding, Amy sought further information and found it possible to safely continue. She also discusses the complexities of parenting with MS, the support from her work, and her ongoing commitment to breastfeeding. 

My new picture book on how breastfeeding journeys end, The Story of Jessie’s Milkies, is available from Amazon here -  The Story of Jessie's Milkies. In the UK, you can also buy it from The Children’s Bookshop in Muswell Hill, London. Other book shops and libraries can source a copy from Ingram Spark publishing.

You can also get 10% off my books on supporting breastfeeding beyond six months and supporting the transition from breastfeeding at the Jessica Kingsley press website, that's uk.jkp.com using the code MMPE10 at checkout.

Follow me on Instagram  @emmapickettibclc or find out more on my website www.emmapickettbreastfeedingsupport.com 

Resources mentioned - 

The UKDILAS service https://www.sps.nhs.uk/home/about-sps/get-in-touch/medicines-information-services-contact-details/breastfeeding-medicines-advice-service/ (health professionals and breastfeeding supporters make contact on behalf of parents).

The Breastfeeding Network Drugs in information service: https://www.breastfeedingnetwork.org.uk/drugs-factsheets/

MS Society https://www.mssociety.org.uk/

Facebook groups - 

MuMS UK - https://www.facebook.com/groups/351614711568755/

MS UK - https://www.facebook.com/groups/MSUK1/

Breastfeeding and pregnancy on Ocrevus, Rituxan and Kesimpta  -https://www.facebook.com/groups/412257639666264/

This podcast is presented by Emma Pickett IBCLC, and produced by Emily Crosby Media.

Transcript

This transcript is AI generated.

[00:00:00] Emma Pickett: I am Emma Pickett, and I'm a lactation consultant from London. When I first started calling myself Makes Milk. That was my superpower at the time because I was breastfeeding my own two children, and now I'm helping families on their journey. I want your feeding journey to work for you from the very beginning to the very end.

And I'm big on making sure parents get support at the end too. Join me for conversations on how breastfeeding is amazing and also sometimes really, really hard. We'll look honestly and openly at that process of making milk, and of course, breastfeeding and chest feeding are a lot more than just making milk.

Thank you very much for joining me for today's episode. I'm talking to Amy, Amy Winterborne from Watford just north of London. And as you'll have seen from the title of the episode, we're gonna be talking about her experience of breastfeeding alongside a diagnosis of ms. But before we start talking about that, Amy, tell me about your family.

Who have you got? Who are your children? 

[00:01:06] Amy: So I have two children. Um, I have William, who was born in 2020 during lockdown. Uh, he's almost five and I have James who is about to turn two next month. 

[00:01:19] Emma Pickett: Lovely. Those are very good traditional names, you know, messing around with those names. Um, tell me a little bit about William's breastfeeding journey.

'cause you know, I'm into talking about natural term breastfeeding and, and ending journeys. Uh, I, I'm, I'm correct. And think he's not breastfeeding right now. He is not, no. Um, how did the ending go for you? Tell us about 

[00:01:38] Amy: that. So. So I breastfed him until he was two and a half. I weaned him with support from you, Emma?

Um, when I was pregnant with my youngest son. Um, so he fully weaned by the time I was six months pregnant. It was a really natural way to end things. I, it was instigated by me. It was more me led than child led, I suppose, because the. Prospect of, um, tandem feeding didn't appeal to me. I didn't think that it would necessarily work for us and it was a really nice, gentle, natural process.

We read stories, we talked about it. We generally gently introduced the idea and I think the fact that I was six months pregnant also, um, assisted, I think I probably had less milk and it was less appealing and it went really smoothly. I was really happy with how that journey ended 'cause I was quite nervous.

About how that might go. I didn't want it to be upsetting for either of us as far as possible. Um, and it wasn't, it went really smoothly. So I was really happy with that and I was happy to be nursing just one child at a time and it has worked really well for us. Definitely. 

[00:02:44] Emma Pickett: Good. I know it's a little while back to think about this, 'cause you know, it was back when he was sort of two and a half, but do you remember the things that you were saying to him?

How were you wording it when you were explaining that that breastfeeding was coming to an end? 

[00:02:56] Amy: So we started by. I sort of just gently, gently introducing the concept that breastfeeding ends. And so I would sort of raise that sort of topic with him and I sort of say things like, you know, well, I wonder. I wonder if so and so, it could be anyone.

I don't know. I wonder if they're still having mommy's milk or something like that. And just sort of gently introduce that idea that one day you won't need it anymore because you'll be big and strong. You know, uh, and that, so I started with that. We also did talk about, a little bit about the baby needing the milk.

Um, and not in a, not to a great degree, and I was a bit nervous about it because I didn't want to make him feel that, you know, oh, the baby's coming along and taking you by milk. But he seemed to respond really well to that when I talked to him about the fact that, you know, there was gonna be a new baby and, and, and babies need lots of milk and let's, why don't we save it for the baby?

And that actually seemed to go fine. He responded very well to that. He's, he kind of just accepted that. Um, and there was never any jealousy or any kind of issues around it, so I was really pleased. It might not work for some people. It definitely seemed to work well for us. 

[00:03:54] Emma Pickett: That's actually really helpful 'cause I think a lot of people are nervous around that concept.

Yeah, they, the last thing they want to do is associate the baby with kind of taking the milk away, but actually. The reality is that you were weaning because you were pregnant and didn't want to tandem feed. So I actually really respect the way you kind of lent into that. Yeah. And were just super, super honest.

And I'm guessing if he had freaked you'd have gone in a different direction. Yeah. But that it felt like something he was responding to and he was, yeah, I 

[00:04:18] Amy: think, I think I started by explaining that, you know, what do you think the baby will eat? And what do you think? How do you think, and so we sort of talked about, you know, well the ba the baby will.

We'll need milk and, you know, maybe, maybe you are getting quite big now and, you know, maybe, maybe you don't need the mummy milk as much and maybe the baby, um, maybe the, we can save some for the baby. And, and it just kind of worked. He just took to it. And I think if, like you say, if he hadn't, I probably would've dropped it and I would've moved on to something else.

But he seemed really receptive to it and it never seemed to cause us any issues. So, yeah. Um, I would reassure people that if you feel like that's the route you need to go down, for whatever reason, it, it didn't cause us any, any drama, any upset, any problems. Yeah, it was fine. 

[00:04:57] Emma Pickett: And then you had a good three months before James came along?

Yes. And did, just in terms of William, did he ask to feed again when James was born? What was his, what were his, his feelings around breastfeeding? 

[00:05:07] Amy: He did occasionally. Very occasionally. And I didn't say no, you know, if he said he wanted to try some milk, I. Kind of just accepted it. And he would invariably try and latch, couldn't really latch, didn't get upset about it, and just sort of laugh, would laugh and sort of be like, oh, and that would be the end of it.

I didn't really want to deny, I didn't want to be like, no, that's not for you anymore. So I just sort of went with it and actually he didn't, he didn't resume breastfeeding. He was happy not to I, but very occasionally he'd sort of side up to me as I was feeding the baby and say, can I have some, can I try some?

And I just kind of went with it and it didn't develop as I feared it might into a. Prolonged, you know, restarting the breastfeeding journey. So that was fine. 

[00:05:48] Emma Pickett: And what do you think you would've done if he had got it? Really enjoyed it and latched fine. And gulped away and asked for some two hours later.

Did you have that plan in mind or were you just kind of responding in the moment? 

[00:05:59] Amy: Yeah, I didn't, I knew it was a possibility. I didn't really think that far ahead. Sometimes I find that not thinking too far ahead actually works better than trying to come up with every different scenario that might transpire.

So I dunno what I would've done in that scenario. I may well have gone with it. I don't know. 

[00:06:16] Emma Pickett: Yeah. Yeah. I, I like that. We, we always think we've got to kind of pre-plan. You're right, sometimes you just have to listen to your gut in the moment, don't you? And in that moment, your gut said, no, I don't want to have him feel rejected.

I want him to be part of this. Yeah. And I'll, I'll deal with the next problem when the next problem comes. Yeah. Let's not, and deal with invented problems that may not even be a problem. I think I did occasion and your laid approach. Sorry to interrupt. No, your laid back approach probably rubbed up on him because if you'd suddenly looked terrified and your brain had been whirring through all the possibilities, it probably would've made it much more intense.

[00:06:47] Amy: Yeah, I think so. I think I did redirect him a couple of times. I might say, should we get some milk in a cup? And often he'd just say, oh yeah, okay. And then that would work too, so, oh, you know, it was, I tried to keep it as lowkey as possible. 

[00:07:01] Emma Pickett: So you've got two and a half. Well, by that point he was nearly three.

Yeah. A newborn. How did you find life with two, putting aside of the breastfeeding issues, how was tandem parenting? 

[00:07:12] Amy: Um, initially. Quite overwhelming, if I'm honest. I had a C-section with both my boys, so that adds additional challenges, I guess when you've got two small children and you're recovering from a C-section and you feel like you can't be in two places at once, you can't just leap out of the chair and you know, chase after your toddler, your 3-year-old.

I was very lucky that my husband had. A reasonable amount of time off, um, for our, for my second maternity leave. So he had, um, a, a decent chunk of paternity leave, which really helped. But yeah, it was a real adjustment for sure, trying to balance the needs of both children and trying to adjust to being a parent of a newborn again, and to keep everybody happy.

It's a challenge. Definitely. I found it, you know, a real adjustment. 

[00:07:55] Emma Pickett: Yeah, no, it's not easy when you've got support. It's not an easy time worrying about everyone's needs and, and our needs often come later down the list. Mm-hmm. Mm-hmm. So breastfeeding with William was obviously a successful, positive experience.

You, you know, you carried on right through your pregnancy, which is lovely. And then. And then breastfeeding with James. Any particular issues? Any problems with matching or early breastfeeding problems? 

[00:08:17] Amy: I was really lucky with James that he took to it really naturally. So when William was born, he was born early at 36 weeks and he was what they call RUGR.

So he was only four pounds, eight when he was born. So we did have some struggles with William. We mixed fed him to begin with because that was what was recommended in the hospital because he was so tiny. And I was very keen to move away from that and, um, to move to exclusively breastfeeding. And with the help of an I-B-C-R-C local to us, Wendy Le, she was lovely.

She really supported us and helped us move towards that. With James, it was much more straightforward. He was that much bit bigger. When he was born, he took to it much more naturally. So apart from a little bit of jaundice, no other issues with James. He, it's been a pretty smooth sailing with my journey with him.

[00:08:59] Emma Pickett: It's lovely to you do a shout out for Wendy. Wendy's, uh, not so far away from me, so quite often I overlap with people that will meet people she's worked with and she's fantastic. Um, yeah, really knowledgeable and experienced. So as James got close to 12 months, you are thinking about getting ready to go back to work and something else happened, which is your MS diagnosis.

Yeah. Absolute back to basics for anyone who doesn't know what MS is, I'm not asking you to read out the Wikipedia entry, but if someone really doesn't know what we're talking about, my knowledge comes from the West Wing and President Bartlett. So obviously I'm not super knowledgeable about this either.

What can, how would you summarize what MS is if someone was asking you? 

[00:09:40] Amy: So, MS is an autoimmune condition. It affects your brain and your spinal cord. So inside your brain and spinal cord, you've got nerve fibers and they're coated with this protective substance called myelin. And basically that helps the messages from your, from your brain travel quickly through your body.

And in someone with ms, their immune system attacks this myelin coating, which creates these lesions or sclerosis on your, on your brain and your spinal cord. And this disrupts the messages going from your brain to the rest of your body. Um, and that's what causes MS symptoms. So those are things like tingling, numbness, tremors.

Weakness, vision problems are really common. Dizziness, balance issues. Fatigue is a really big one. Issues with your bladder and bowels and also, um, mobility issues. So those are the kind of, that's a very high level summary of kind of what causes MS and how it manifests itself. There are different types of ms there's lots of detail you can go into, but that is a very basic overview of, of what MS is.

[00:10:41] Emma Pickett: Okay. Thank you for that. I appreciate that. So mul MS stands for multiple sclerosis. That's the word I can't say. Mm-hmm. And sclerosis is, is a word that means lesions, is that right? Yeah. So that refers to the lesions on the, on the myelin. Sheaths. Okay. Yeah. What were your early symptoms? How, when did you know something was happening?

[00:10:58] Amy: So, in retrospect, I suspect I've had MS for, for actually a really long time, maybe, maybe even as much as 20 years. But the symptoms I had initially were. Always passed off as, um, stress related. Um, and then it's, it only, it took, uh, my most recent relapse, which is what led to my diagnosis for, for me, for it to be identified as ms.

Um, but what that, what that looked like was when I, when James was four months old, I noticed when I was walking him out and about. I developed a little bit of a tremor in my thumb. In fact, I noticed that when I was sort of laying in bed and it was pretty mild and I kind of assumed it was just sort of related to being tired, having a new baby, having two children to look after.

And then I noticed that it sort of was occurring in my leg as well as I walked and I was pushing the pram. I could feel it at the same time as the tremor in my thumb. So I went to my GP and they initially thought it might be just a sort of vitamin deficiency. You know, I'm breastfeeding, I'm doing, they, you know, people put these things down.

You've got a young baby, you're still breastfeeding the, maybe you're just a bit deficient in something, and that's what's causing these neurological issues. But after a few months, it was obvious that it wasn't caused by that. So I was then referred to a neurologist who carried out MRIs, blood tests, that kind of thing.

And that's, that's when I got the diagnosis. I also had very bad fatigue, but it was very hard to unpick that from life with a newborn. And I had very bad fatigue during my pregnancy with James two, and I was always just told You probably got low iron. You're just pregnant. This is what happens. People get tired.

And I used to say to them, but I'm so exhausted. I've been pregnant before. I know I didn't have another child at that point. But you know, this feels more than just pregnancy tiredness. And everyone was always just like, oh, I'm sure you'll feel better when, when, when you've had your baby. And um, as it turns out, you know, perhaps there was a bit more to it than just being exhausted and stressed and tired and run down.

Um, but it's very easy to pass those things off as that. Yeah. Yeah, at the beginning. 

[00:12:55] Emma Pickett: Yeah. Especially when we're women and when we have children and when we're breastfeeding. These are the times when people often don't feel listened to. You mentioned you used the word episodes. Mm-hmm. So. Some types of MS can kind of come and go.

Yes. Um, this is again my west wing knowledge. So relapsing remitting. Yes. Is that a phrase? That's Yes. Is that the 

[00:13:13] Amy: phrase that's applied to you? Yes. So I have relapsing remitting ms. Um, it's the most commonly diagnosed form of ms, but there are also other types of ms. So there's primary progressive and secondary progressive.

And those are types of MS where you don't experience periods of remission. It, it either gradually, gradually progresses from onset, which is the primary progressive ms, or you can have secondary progressive ms, which is where you are relapsing, remitting MS sort of changes and you no longer have those periods of remission anymore.

So that can happen fairly commonly with relapsing remitting ms, but usually much further down the line. And with the development of the. Treatments that we have now, the hope is that, you know, you either don't go on to have secondary progressive MS or it is much further down the line and the progress is, is much more slow in comparison to, you know, 20 years ago.

[00:14:03] Emma Pickett: Okay. You mentioned that you've, you've been having possibly having symptoms for years and years and were undiagnosed for years and. What were some of those very, very early symptoms and how old were you when you maybe noticed them? 

[00:14:15] Amy: So I started having very brief periods of kind of vision issues. When I was studying for exams at university, I felt like I couldn't see the words on the page properly, and I was just told at the time, you're just studying too much.

Um, you're, you know, very stressed about your exams. It's probably that I had some tests and they kind of identified some inflammation on my optic nerve, but no one ever took it any further. I also experienced, um, episodes of sciatica once or twice, and it always coincided with very stressful periods in my life.

Um, you know, the loss of loved ones, things like that. You know, I would all of a sudden get, you know, this sort of sciatica, um, which I now realize is incredibly similar to the symptoms I experienced now with this current relapse. And so it makes me think and reflect on it. Um, and my, you know, medical team also agree that it's very likely that these things were.

MS. Sort of relapses, I suppose, but just not identified as that facial twitches as well. You know, sometimes when you're tired, you have a little bit of a, sometimes you can feel your eyelid, twitching, things like that. I had that, but perhaps a little bit more progressed. So it affected sort of one side of my face, but not visible to anybody else.

And again, it was just like, you're tired or stressed, just you know. You know, I think at one point my GP tried to prescribe me antidepressants to treat that, and I said, no, I'm fine. I don't need it. But you know, that was his sort of response that. It was most likely nothing. 

[00:15:34] Emma Pickett: Yeah. Correct. If I'm wrong, but stress can make MS symptoms worse.

Yeah. So the idea that stress is just stress is just stress. Actually, that could have been, you know, an MS episode being Exactly. Being exacerbated by stress. Yeah. So jumping to your diagnosis when you were diagnosed, James was just coming up for one, you're about to go back to work. Yeah. Were you expecting this diagnosis or do you, did you have a kind of horrible time, standstill moment in a, in a doctor's room?

[00:16:01] Amy: I was half expecting it. I had started experiencing symptoms in the October I was diagnosed the following June, and probably until about the Easter before I was diagnosed, I was sort of in sort of blissful denial about it all, thinking it was a vitamin deficiency or something like that, and it was only when I spoke to my gp, my very lovely gp.

And said, yeah, the issues have got been a little bit better, but they're still there. And she said, if they're still there, you need to go and see a neurologist and you need to, I'm gonna refer you and you need to see them because it might be ms. And at that point, I'd already Googled it. I knew that that was a potential cause of my symptoms, but it was that point that kind of made me take things further and take it more seriously.

Um, so when I got the diagnosis, it wasn't unexpected, but you know. It wasn't news that a year before I would've expected to have received. I, you know, it was, there wasn't a moment, but it was, um, you know, not the news I wanted to hear. 

[00:17:00] Emma Pickett: No, I care. I guess that Okay. I mean, on the statement of the century.

Yeah. Even if you're expecting it, that doesn't make it any easier. No. And obviously James was nearly one. William was what, sort of coming up for four at that point. Mm-hmm. Did you think, gosh, I can't go back to work, or did you have to go back to work? What was kinda racing through your mind in those, in those early hours and days?

[00:17:21] Amy: So genuinely my biggest concern. Was about whether or not I would be able to continue breastfeeding James. So, and, and it surprised me. It shocked me that that was my overwhelming concern. So obviously I was, you know, in the run up to my diagnosis and shortly after my diagnosis, I was obviously looking up, you know, what MS means.

And, you know, after I'd realized it probably wasn't, it wasn't gonna kill me, um, but was perhaps gonna, you know, impair me in some way at some point, maybe one day. Um, my immediate next thought was, does this mean I can't breastfeed anymore? And I was surprised by how much that dominated my thoughts in those early days and weeks and how strong a reaction that evoked me because, you know, by that point I'd been breastfeeding for I guess three and a half years or something.

I dunno. With a short gap in between children, you would've thought it'd be obvious that breastfeeding is quite an important part of how I. Mother, my young children I suppose, but it hadn't really occurred to me until the point at which it became possible that I might not be able to do it anymore. How Sort of crucial I felt, how much of a tool I used it for, you know, to.

To, to get my son to sleep, to comfort him, to regulate him when he's upset, and the thought of someone taking that away very quickly was kind of terrifying and heartbreaking and just sent me into a bit of a spiral. I was just, yeah, I was surprised by it. My husband was surprised by it. Despite knowing that breastfeeding was important to me, I don't think I appreciated quite how important it was until that moment really.

[00:18:52] Emma Pickett: Yeah. Thank you for sharing that. You expressed that really powerfully. So, I mean, I'm not gonna put thoughts in your head, but the, you know that the idea of it being torn away from you. Mm-hmm. Not only was it something you'd be losing, but losing potentially so abruptly at a moment of crisis in your family is, you know, this, this is just a horrible thing to contemplate.

So did you whiz on Google and find out what was the next step for you in terms of working out what was an option? 

[00:19:17] Amy: I obviously spoke to my neurologist, um, about. Whether or not he thought I could continue, because at that point, even before my diagnosis, in fact, the question arose because I had to have RI scans with contrast eye.

And so at that point you're immediately like, can I, can I do that while I'm breastfeeding? And the advice currently is yes, but there is mixed advice out there. Some, some NHS trust still give out slightly outdated advice about pumping and dumping. Luckily, you know, the hospital I was at was, um. We're happy to say you, you, you can breastfeed while, but, but they still very much caveat it with if you're comfortable, which is fair, but does plant a little seed of doubt in your mind.

It doesn't, you know, make the decision easy when people are saying, you know, it is completely up to you. We're happy for you too. But, you know, everyone makes their own decision, which is. Which is absolutely right. Yeah. But doesn't, still doesn't make it an easy decision. 

[00:20:06] Emma Pickett: No. Yeah. I mean, some people, as you say, are literally told, oh, you can't for 24 hours.

Yeah. We don't, you know, we don't recommend it, which is not evidence-based at all. Yeah. And, and you know, you can go to the breastfeeding network website to get that, the leaflet on, on MRIs and, and yeah, reading about contrast eyes and make a decision that feels comfortable for you. So you'd already kind of been through a little bit of that?

[00:20:26] Amy: Yeah. I then had to go on a very strong course of steroids, which they sometimes put you on when you're having a relapse to try and bring that relapse to an end. And I think that's the point at which I reached out to you, Emma, actually. Um, because I had been given, I'd been told by my neurologist I needed to take these steroids.

He recommended I take them to try and ease the symptoms of my relapse and his advice to me was, it's a five day course and you need to stop breastfeeding for that duration of that five days. And I was just thinking how, oh yeah. So James was 10 months, I think, at that point, or 11 months. And when I said that to him, he said, well, how old's your baby?

And I said, 10 or 11 months. And my neurologist is lovely. But he was sort of, there, there, there was an element of some of sort of thinking, well, you know, they're not tiny baby, you know, how hard can it be? He didn't say this and um, maybe he didn't think this, but you know. How hard can it be to stop breastfeeding for five?

Just, you know, it's a very simplistic attitude sometimes by people that just stop for five days, 

[00:21:21] Emma Pickett: switch the button off, what's the problem? Yeah, yeah. I mean, even somebody who's supportive of breastfeeding a 12 month old or a 15 month old imagines that stopping is very straightforward and Yeah. And without realizing how deeply intertwined is into every aspect of your parenting.

So you emailed me and I signposted you to the UK Dilas Organization, which is the drugs and lactation advisory service. And we asked them about your steroids and, and what the situation was with Take continuing to breastfeed, and what was the message you got from them? 

[00:21:50] Amy: The message I got from them was that the evidence is that the steroids that I was on were safe to breastfeed on, albeit they recommended, I think between a two and four hour gap between taking the steroids and the next feed.

And, you know, they explained the various reasons and they provided me with all the evidence and the um, and, and the studies and things like that, that demonstrated that they thought it was safe. I poured over them. I read through all of those studies and articles and eventually was comfortable with the idea that if I had a break, um, between the steroids and feeding, that I was happy to continue.

So I think I, the time period I was comfortable with was 12 hours because my son was of an age where I could go for 12 hours without feeding him. I felt that that was, you know, I wanted to leave it as long as humanly possible before I fed him. So I think I took my steroids at about 6:00 AM in the morning after his very first feed when he woke.

And then, um, I wouldn't take them again until, uh, then I, sorry. Then I wouldn't feed him again until bedtime. And for five days we managed that. It wasn't easy, but it wasn't terrible. I think I was dreading it. I thought it was gonna be awful, but actually, you know, I was able to distract him during the day and then I was able to feed him at night and that was, and, and overnight.

So that really. Worked for us and got us through that tricky period. 

[00:23:07] Emma Pickett: Okay. I want to tell you about my brand new book called The Story of Jesse's Milky. It's a picture book for two to six year olds, and I wanted to write a book that was about weaning, but also not about weaning, because breastfeeding journeys end in all sorts of different ways.

So Jesse's story is presented as having three possible endings. In one ending, his mom is pregnant and Jesse's going to share his milk with a new baby. In the second, his mom is getting really tired and it's time for some mother led weaning. And in the third, we see a self weaning journey as Jesse's attachment to breastfeeding gradually fades.

There are beautiful illustrations by the very talented Jojo Ford, and the feedback from parents so far has been so lovely and touching and I'm really excited to share the book with you. If you're interested in my other books for Older Children, I have the Breast book, which is a guide for nine to 14 year olds.

And it's a puberty book that puts the emphasis on breasts, which I think is very much needed. And I also have two books about supporting breastfeeding beyond six months and supporting the transition from breastfeeding for a 10% discount on the last two. Go to Jessica Kingsley Press. That's uk.jkp.com and use the code MMPE 10 Makes milk picket Emma 10.

You came to the end of that course of steroids and what's the next step in terms of treatments and medications? What comes next? 

[00:24:38] Amy: So, so I had a little reprieve for a few months while they put through all of the processes to get me on the next step of drugs. But the next stage is to be put on a disease modifying therapy.

And there are a number of different drugs that they can use. Um, but the idea behind them is that they. Effectively prevent relapses and some of them are highly effective and, you know, reduce relapses to one every 10 years or something along those lines rather than, you know, multiple relapses per year.

So they are super effective and actually. The decision to take a disease modifying drug and which one to take was actually a lot more simple than the steroid discussion that I had to have because the advice on some of the disease modifying drugs and the two that I was offered, one was called Ocrevus and one was called Cota.

They, the advice on those are fairly clear cut. My neurologist was really happy for me to continue breastfeeding on those. The, the advice was pretty straightforward, um, that if you, if you want to continue, you can, and we've got no reason to think that there's any risk. That doesn't mean to say there was actually an easy decision.

There is still a nervousness. You know, they are, these are strong drugs. Some of them were developed to treat different types of blood cancer and you know, these, the, the, they, they feel quite scary things to take. You know, it's a monthly injection I have to take and even being told, you know, they can't ever say it's risk free.

Um, but they say, you know, we think the risk is very, very, very low and the benefits of breastfeeding and continuing to breastfeed for both you and your baby outweigh any risk. We think the risk is really minimal. It still makes you, you know, I think you're, it's natural to still feel like, you know, if I could choose not to be on these drugs and not to continue to breastfeed, I would, but obviously the better outcome for all of us is for me to be on these drugs and to continue to feed my son.

Um, but it doesn't make it an easy decision. 

[00:26:27] Emma Pickett: Yeah. 

[00:26:27] Amy: And you know, there's still an element of discomfort around it, but, but ultimately it's the right thing. And, you know, I'm. A year on from my diagnosis now almost, and still breastfeeding James. And, um, really happy with that decision and, you know, 99.9% comfortable with it, as comfortable as I ever can be.

So I feel like it's been a great outcome considering where I thought I might be when this all started. If someone had said to me when I was diagnosed, don't worry, you know, on his second birthday, you'll still be breastfeeding him. Um, would've been a huge relief to me. Um. Because at the time I didn't have a clear answer and it was my big worry.

So yeah, it's ultimately all worked out really well. 

[00:27:13] Emma Pickett: Yeah, I'm so glad to hear that. One thing I haven't asked you about that I'm wondering about is, is the feelings of other people. So even without MS being in the picture, quite often moms are told, oh, you know, it's time to stop breastfeeding now, and you're tiring yourself out and this can't be good for you.

And you know, especially if you're going back to work, it's too much. Were you getting from somebody? Listen, I hear breastfeeding matters to you, but come on, we need to do everything we can to look after you and protect you and keep you safe and rest. Make sure you're rested. Were you getting pressure from anyone else to stop breastfeeding?

[00:27:43] Amy: Uh, definitely people have expressed surprise. I continue breastfeeding or you know, I'd still to this day get comments from people saying, always felt for that now, isn't he? 'cause you should stop that now, shouldn't you? Second time round. I feel a bit less bothered by people's comments about that sort of thing.

I feel much more strongly that. I know that this is the right thing for, for both of us. It's, um, it works for us, you know, and so if people raise those sorts of questions to me, obviously it does sting and does, you know, it's, it's, it's not what you wanna hear from people, but at the end of the day, I just say, look, it, it's working really well.

We're both really happy. It works really well for us. So, you know, we'll carry on until it doesn't. And that's kind of my attitude to it. But definitely you do get that suggestion that, um. You should be looking after yourself and putting yourself first. And um, I actually, it is one of the things that kind of, one of the things that probably is worth addressing from my perspective at least, I mean in my experience, some people might think that continuing to breastfeed your baby when you've got ms, is it not, is it not gonna make you feel worse?

Is it not gonna take more out of you? Like you say, should you be looking after yourself when you are, when you're in this position? I've actually found the contrary, like breastfeeding is by no means an easy thing to do, but. I have noticed that the times when I'm sat laid feeding my youngest son, particularly at the end of the day, getting him to sleep is the time in the day that I'm actually at my most rested.

It's not to say it's easy, you know, sometimes, you know, feeding him can be difficult. He's nearly two and it's, you know, not always this straightforward, lovely process. It can be, you know, it can be pinching and scratching and all that kind of thing, which is not that restful. But you know, I notice that my heart rate is at its lowest when I'm sat feeding him.

And often I find that when I've got him to bed and I come downstairs, I feel better than I have done the late afternoon. You know, that period is actually quite restful and it's comforting. And I suppose the oxytocin and all of those things actually helps me. And probably if I'd experienced the fatigue that I have with MS now, before I'd had my children, I probably would've assumed that.

Breastfeeding is just gonna be another drain on my energy and my resources. And maybe, maybe it is in some respects in the early days of breastfeeding maybe. But I think overwhelmingly it is a calming kind of comforting, restful thing. And that actually I think has more benefits than just, um, stopping breastfeeding altogether.

[00:30:23] Emma Pickett: Yeah, beautifully expressed. Yeah, I, I sometimes meet moms who say, you know, I feel that breastfeeding my 2-year-old is draining me. And my answer to that is, well, is if you feel that to be the case, then that is probably the case for you. You know, if you have that emotional association with breastfeeding, if you feel that, then who am I to say otherwise?

That is how draining works. Draining is also a psychological, mental, emotional process. But the, the, the, the scientific idea that, you know, feeding a, a child once or twice in 24 hours is physically draining. You probably isn't necessarily backed up with the physiology stuff, but this is about emotions.

This is about psychology and, you know, putting a nearly 2-year-old to bed without breastfeeding, the idea that regulating them at the end of a working day, or, you know, picking 'em up from nursery and coming home and coping with them between that pick up and bedtime phase is easier without breastfeeding.

I don't think we could necessarily say that that would've been less stressful for you or more restful or easier for you. No. And the beauty of being able to kind of switch them off at bedtime so quickly. I mean, you're literally, you're literally injecting sedatives into their system. Yeah. And, and bedtime and naps are just super easy to handle.

And actually, I've worked with lots of people who've had chronic fatigue or, or other autoimmune illnesses and, and it's very, very rare for someone to say to me, I think breastfeeding has made this harder. Yeah, lots of people will say. This is the one time I can get them to rest. I can guarantee we can all nap together.

I can guarantee I can get 'em to lie down. Yep. They will come on the sofa and they will lie on me. And I know they're not gonna be running around for those, you know, 20 to 40 minutes. Um, you know, you have got that opportunity. And what you said about your heartbeat, that's a very vivid, um, image of, of your body just relaxing and leaning into the oxytocin and Yeah.

And slowing down. And, and doctors were happy. Obviously. The doc, the, the steroid conversation was a slightly tricky conversation. Did you go back and say. Look, I've got this data from this organization and, and they feel it's okay to breastfeed or did you not even bother? 

[00:32:15] Amy: No, I did. I was, I was in two minds 'cause I thought I could get challenged and I've got the evidence I'm happy with.

So, so is it worth it? Is it just gonna add more uncertainty? But ultimately I did send my consultant the information that I'd got from UK Dial and said I was happy to continue breastfeeding and I didn't really get any, I didn't get any comments back. I didn't get anything. They didn't say don't do it.

They didn't say, you know, okay fine, but I advise you against it. I got, you know, they kind of just accepted it. They were like, okay, fine. Come and pick up your steroids tomorrow. 

[00:32:44] Emma Pickett: Okay. Thank you for sending that because that will affect the next person and the person to come after you. Yeah. And we make change by sort of chipping away, not that your responsibility is to the next person, but, but, but by feeding that back, that will have helped future parents for sure.

Yeah. So you've been starting the injections. Yeah. And you've been having those monthly for quite a long time now. How, how are you getting on at the moment in terms of your symptoms and how you're feeling? 

[00:33:08] Amy: So I still have some residual symptoms from my relapse that led to my diagnosis. So I still struggle with fatigue, but, you know, not every day.

Um, I just have sort of flareups. Um, some days are harder than others. And when you talk about fatigue, it's like, um. The risk is that you say to people, Ugh, I'm, you know, I'm really struggling with fatigue today. And people say to you, yeah, I'm really knackered too. Oh, I had a late night last night. And you're like, for anyone who's experienced sort of MS fatigue or, you know, chronic fatigue, any similar illness that causes sort of fatigue symptoms.

It is on another level too, just being tired and having run down. It's, it, it's debilitating. So I still struggle with that occasionally. Um, and I still have some issues with my left leg. In terms of mobility. It makes walking for long periods of time tricky. So for more than sort of five or 10 minutes, I start to notice that my left leg becomes weaker, heavier.

My foot can skim the floor. It's called foot drop. Um, and I've never tripped, it's never caused me any issues, but it slows me down massively. And when you've got two young children that you're trying to run around after, it can be, it can be really hard to manage. And there's no cure for ms. There's no cure for the sort of damage that's happened.

Now they can hopefully prevent further damage. But you know, I'm sometimes people are surprised that, oh, that's it. 'cause it sort of, oh, you're still struggling with that. Is there nothing they can do? And you're like, no, there's not. My spine or cord has some damage to it and then's nothing they can do to fix it.

So you have to learn to adapt and find ways to work around these things. And you know, recently I've found a really. A great workaround for taking my kids to nursery and soon, my oldest to school in September, which is that we bought a sort of secondhand electric cargo trike that we, that I can use much more easily than walking.

And so I think you just have to accept that sometimes when you get a diagnosis like this. You have to adapt, you have to change. But that's not always a negative thing. You know, I'm having to eat more healthily, I'm having to exercise more, and I'm having to take my kids out on a truck cargo trike. Um, but they love it.

They absolutely love it, and they would prefer me to take them out on the cargo trike to any other form of transport at the moment. So, although it feels like you lose quite a lot when you get a diagnosis like this. It's not all negative and there are positives to be gained from it. And um, yeah, it's not as scary as it sounds at first.

I'm still coming to terms with my diagnosis. I'm still in the early days of diagnosis, really, you know, I'm still just under a year in and I'm still adapting to it and learning what my limits are and what helps and what doesn't help. But there's lots of, you know, positive things you can take from it too.

[00:35:41] Emma Pickett: And ha ha have you had a conversation with William? Does, is that something you've talked to him about? What's happened with your diagnosis is, I dunno how you have a conversation with a nearly 5-year-old or whether you even should, but Yeah. What, what's your feelings about how to talk to William? 

[00:35:56] Amy: It's no secret.

I have ms um, I talk about it openly around him. I've never had a really in-depth conversation with him about what MS is. Um, but I, I do plan to, and I think. If he ever has ever has any questions, I will always answer them in a kind of an honest, age, appropriate way. Um, so sometimes when the fatigue is bad, or sometimes when, um, my leg is causing me trouble, I just explain it in a really simple way.

I'll just say, look, mommy's really tired today, and like, you know, that's, why don't we do this instead of that? Or, you know, let, let's, and, and he's, he's really understanding for a 4-year-old about those sorts of things. And if my leg is playing out, I'll just say, my leg aches today. Like, I try not to really over-engineer it.

I just sort of explain it like it is. If my leg is hurting, I'll tell him My leg iss hurting a bit today. Sometimes my leg is a bit funny. I try and make an effort to kind of point things out to him about p you know, uh, if he sees someone walking with a stick or if you see someone in a wheelchair, I'll try and like.

Start to kind of develop those conversations with him that, you know, people need them for all kinds of things and they're really helpful and you know, isn't it great that you know that someone has that to now they can go to the shops and now they can go to the park and you know, these, you know, people need all different kinds of things to help them.

So I try and have those conversations with him, but never a detailed kind of, this is what MS is, because I think he's a little bit, probably a little bit young for that at the moment, but I'm sure that time will come. 

[00:37:24] Emma Pickett: Yeah, a bit small to sit down with an anatomical diagram and talk about my and sheaths and things.

Yeah. Um, and have you met anybody else who's breastfeeding with ms? Is there a, is there a kind of peer support type community out there? 

[00:37:36] Amy: No, I haven't in person, but I, um, am a member of. Some Facebook groups, which are super helpful. There's, um, a sort of mums MS group in the UK on Facebook, which is really handy and sometimes breastfeeding gets brought up on that.

And there are also some very specific Facebook groups to support people who are breastfeeding on the specific drugs that are prescribed for ms, which is again, really super helpful and a good source of support and, you know, a good place to ask questions and get tips and things like that. 

[00:38:07] Emma Pickett: Great. And then thinking about James' journey, oh, I didn't ask you about going back to work.

How, how did that work out in the end? Did you, did you go back to work when you, at the time when you were expecting to 

[00:38:15] Amy: I delayed it by I think a month, um, so that I could complete the course of steroids. It all came at once I was due to go back to work. I was due to start this five day course of steroids, which I've been warned, could make me feel dreadful and, um.

James was due to start nursery. I think his settling sessions were due to be the week that I was starting the steroids. So I pushed all of that back by a month. Did the steroids settled James at nursery in the week or two following that and then started back at work? It was an intense time for sure. Um, there was a lot going on, but we managed and we got through it.

[00:38:45] Emma Pickett: And how have work been? Are they supportive of what's going on? Do you get time off for appointments and things? How, how do things work? Yeah, 

[00:38:52] Amy: I do. I'm incredibly lucky. I have a really supportive team at work and as it happens, really unusually in my relatively small team of, I dunno, 25, 30 people, three of us have ms, which is just like, gosh, okay.

Crazy. Um, so my. The head of our team, um, has MS and some, someone else in the team has ms. So they're the only people I know in kind of real life that have MS and we all work in the same team. So that's been really incredibly useful. The support I've had has been great from work, um, but I know not everybody experiences that, and I don't take it for granted because there is a bit of a lack of understanding around ms.

MS is, you know, the most common neurological disorder. Diagnosed in young people, it predominantly affects women in their twenties and thirties and, and you are at higher risk of having a relapse after you have a baby. If you have ms. And breastfeeding can be protective. Um, in there are some studies that indicate that breastfeeding has, does have a protective element to it.

Uh, if you have ms, um, it didn't protect me from having my relapse second time around. It's not a given, but there is some evidence to suggest it does help. But yeah, it's. It's, um, it's been really helpful going back to work and having people there who understand. Um, but like I say, I know that, you know, there is a bit of a lack of understanding out there, so hopefully by doing this and talking about it will increase people's awareness of it and understanding about what it involves.

[00:40:20] Emma Pickett: Yeah, definitely. And I'm really grateful for you to, for coming on and, and telling us about your experience. So what's James' breastfeeding pattern like today? What's, what's a typical 24 hours for him right now? 

[00:40:30] Amy: Um, there isn't a typical 24 hours at the moment. Um, I think he, he seems to have increased his feeding recently.

Um, lots of 

[00:40:39] Emma Pickett: people are nodding listening to to that. Yeah. Nearly two. Let's ramp it up. 

[00:40:43] Amy: Yeah. We, I, I've definitely noticed that when he goes through kind of developmental changes, as is the case with, you know, throughout your breastfeeding journey, you do notice, and, uh, that sometimes the feeding increases, they need you more at night.

Um, and things like that. So I've definitely noticed that we seem to be going back to a bit more of a regular pattern now, but I'm still feeding him, reliably, feeding him at bedtime once or twice during the night, um, when he wakes. And then obviously he's at, I work Monday to Thursday and he's at nursery Monday to Thursday, so he.

Doesn't have any milk when he's at nursery and he seems happy with that. So, and there's usually a feed when he gets home from nursery as well. So you kind of think, you expect by this age that perhaps you'd just be feeding them a couple of times, but, um, more often than not, it's probably four or five times in a 24 hour period probably.

But I'm, I'm comfortable with that. It kind of works for us at the moment, so I'm sure it'll change again at some point. 

[00:41:38] Emma Pickett: Um, no, they do tend to keep us on our toes. So you're, I'm guessing you're co-sleeping at night so you can manage those night feeds? 

[00:41:44] Amy: Yeah, we, I sort of do a bit of a hybrid, so I, we have a floor bed for him, which is basically just a mattress in his bedroom.

Um, and I lay with him to sleep and then once he's asleep I can leave and I can. Get back into my own bed. And then usually on his first wake I will go in with him, I'll lay with him, I'll feed him back to sleep. And if I don't fall asleep myself, I will go back to my own bed. And that seems to work quite well for us.

But if he's waking up really frequently, I will co-sleep with him. I'll stay with him. I definitely, or, or if I'm feeling under the weather, if I'm feeling really particularly fatigued or tired, sometimes I will just stay in with him to manage it. And it's much easier that way. But that, I find that's a really good way to manage it.

So the night wakes are pretty easy. To deal with in, in the sense that all I have to do is lay next to him. So from an MS perspective, I don't, it's not too much of a struggle. If I was having to jig him or I don't know, do anything that was more active and involved, I think that would be very tiring and tricky.

[00:42:41] Emma Pickett: Yep. So Waking, lying. Unzipping. Unpro. Yep. You you go back to sleep. He goes back to sleep. Yep. It's, it's not the end of the world. And the idea that if you night weaned him, he'd suddenly sleep through and you get 12 hours undisturbed sleep is not necessarily something anyone can guarantee. So anyone who implies that's what you should be doing needs to come and meet a bunch of two year olds because they're not, they're not all sleeping through whether or not they breastfeed.

Yeah. And what's your plan for his ongoing breastfeeding? Just playing it by ear. Yeah. Taking it week 

[00:43:08] Amy: by 

[00:43:08] Emma Pickett: week. 

[00:43:09] Amy: I think so. Um. So I breastfed his oldest brother till he was two and a half. There's a little part of me that thinks fair's fair. I should probably at least do that. And I, I think I'm just gonna, I, I think I'm just gonna play it by ear and just see, keep feeding him until a point at which I feel like it doesn't work for me or for him, probably more likely me than him.

I suspect he, he would probably happily continue for a very long time. It might be me that feels like I, I need a change. And, and, and also, you know. There's no guarantee that my medication won't change on for my ms. Um, or that they might want to give me some medication to treat some of my symptoms that's possible and that might not be compatible with breastfeeding.

And if I ever get the to the point where they wanna put me on something that they strongly recommend you don't breastfeed on and that the specialist advice supports that, then that might have to be the point that I. And two. 

[00:44:01] Emma Pickett: So those medications exist and you're aware of some medications that are definitely not compatible with breastfeeding?

[00:44:06] Amy: Yeah, there are some, but luckily none that I'm having to take right now. 

[00:44:09] Emma Pickett: Yeah. Okay. And I'm asking this generally, rather than asking you specifically for you, do people get pregnant while they're on these medications? Are there people continuing their families? 

[00:44:19] Amy: Some. So some, um, so the drug that I'm on at the moment, emta, you can try for a family while you are on that, and then as soon as you get a positive pregnancy test, you have to stop.

But you're, it is fine to take it for the first, I think, three months of pregnancy, you know, in that initial period. They, they don't think there's a risk. Pregnancy is in, in and of itself, somewhat protective of relapses when you have MS because your immune system is naturally suppressed when you're pregnant.

So I don't think there are too many MS drugs that they would continue on throughout your pregnancy. But there are many drugs I think that you can take while you're trying. Um, to conceive. Um, so it doesn't necessarily have to be a barrier to extending your family, starting your family. There are ways, um, to do that whilst also being treated for your ms.

[00:45:07] Emma Pickett: Okay. Thank you for that. So, if someone is listening to this and they've maybe just realized that they've got MS and they're in the middle of breastfeeding or they're trying to make a decision about whether or not to breastfeed. I'm not asking you to have the answer for them because no one else can, but what kind of messages would you want to give anyone who's listening in that situation?

[00:45:25] Amy: I think I would just say that having MS doesn't mean that you have, you will have to stop breastfeeding. There might be some scenarios where that is the case, but I would say that doesn't need to be your starting point. Um, and if you're told by your. Medical team that that is what needs to happen. I would challenge it and I would ask for evidence and I would get some specialist advice from, you know, the, um, breastfeeding network, UK dial, you know, and I-B-C-R-C speak to somebody before making that decision.

If that's not the decision you would be choosing to make, you know, there may be scenarios when, where, where the evidence points to you not continuing to breastfeed, but in my experience, the majority. Of the drugs that I have had to take to date have not prevented me from breastfeeding. So yeah, I would just encourage, um, that if it's an imp, if it's important to you and you want to continue to breastfeed, to challenge those sort of assertions, it's very easy for a doctor to say, yeah, we just suggest you stop.

Because it's kind of the safe, easy answer. But actually sometimes if you delve deeper, speak to the experts, the people who have studied it and know, um, infinitely more about drugs in breast milk. Than, than perhaps your specialist who is obviously an expert in MS or whatever your condition might be. They may not be an expert in drugs in breast milk.

So yeah, I would just encourage people to, to challenge and to, to get some specialist advice. 

[00:46:48] Emma Pickett: Yeah. Thank you for that. That's really important. Sometimes it feels very scary to challenge a doctor. They are. They are the bosses. They are powerful. They know staff that we don't, but as you say, with this one respect, when it comes to breastfeeding and breast milk.

It's unlikely that your specialist is knowledgeable, as knowledgeable in that area as some of these pharmacy teams that we've talked about. So I'll put the information for UK Dilas and, and the breastfeeding network. Um, drugs and breast milk information service in the show notes. Any other resources that you have found particularly helpful?

[00:47:17] Amy: The ME Society have a great website, which provides really useful information on MS generally, but they do also have sections on breastfeeding and MS pregnancy and ms. Like I say, there's Facebook groups I mentioned Ms. UK. And I think it's called Mums UK. And the breastfeeding and pregnancy on Ocrevus, Rituxan and Emta groups, um, have been helpful as well.

So I would definitely recommend them as a resource for anyone newly diagnosed. 

[00:47:43] Emma Pickett: Brilliant. Thank you. I'm gonna ask you to send those to me 'cause I probably can't spell the medications probably. Um, and um, we'll put those in the show notes as well. Thank you so much for your time today. I am so grateful, Amy.

Thank you. You've been really open and honest and I think really given a helpful overview of, of the way you made decisions and, and. You sound like a very together, practical level-headed person. I'm imagining there must have been moments when you have felt really low and have felt like this is not fair.

Um, I don't want Absolutely. Yeah. To poke you and make you feel sad, but I, but you've obviously given an impression today of being totally switched on and everything. You're coping and it's all great, but in those really low moments, I'm, I'm imagining that breastfeeding has given you something maybe and helped you in some ways.

[00:48:24] Amy: Absolutely. To have stopped breastfeeding. Would've just added to the kind of grief and loss that you experience when you're diagnosed with a condition like this. An in sort of incurable, progressive, neurological condition. It sounds very scary. Um, and to then, to then have to stop doing something which you consider really kind of key to your parenting and self, I don't know.

Um, being able to continue to do that provided me with huge amounts of comfort, normality, and it just meant that I, I didn't feel like I'd lost. Yet another thing, the fact that I can continue to breast meat feed my son and it's really important to me, um, is amazing because like I say, you do feel a little bit like you've lost other things when you're diagnosed with all these conditions.

So to be able to continue is to me super important And um, yeah. 

[00:49:13] Emma Pickett: Yeah, I am glad it happened for you and I'm glad that you got all the right information and we're able to continue. 'cause I can hear how important it was for you and uh, James is a lucky wee bloke. Thank you for sharing your story today. 

[00:49:25] Amy: No worries, no problem.

Thank you.

[00:49:31] Emma Pickett: Thank you for joining me today. You can find me on Instagram at Emma Pickett Ibclc and on Twitter at Makes milk. It would be lovely if you subscribed because that helps other people to know I exist and leaving a review would be great as well. Get in touch if you would like to join me to share your feeding or weaning journey, or if you have any ideas for topics to include in the podcast.

This podcast is produced by the lovely Emily Crosby Media.