The Paeds Round from RCPCH and Medisense

Listen to real-world advice and guidance on how to manage a range of clinical topics and much else on education, training and working in paediatrics. With Dr Emma Lim, Consultant Paediatrician and Dr Christo Tsilifis, Academic Paediatric Trainee, plus parents, paediatric specialists and junior doctors.

About

NEW EPISODE AVAILABLE NOW! Episode 4: What's hot on fever?

Listen to real-world advice and guidance on how to manage a range of clinical topics and much else on education, training and working in paediatrics. With Dr Emma Lim, Consultant Paediatrician and Dr Christo Tsilifis, Academic Paediatric Trainee, plus parents, paediatric specialists and junior doctors.

  1. Episode 1: Neonatal herpes simplex virus disease - THANKS (Think Hands And No Kisses) (released 24 October 2023)

    Though common and self-limiting in older children and adults, herpes simplex viral infection can cause a spectrum of neonatal disease from simple lesion to devastating encephalitis. How can we identify babies at risk and provide appropriate treatment?

    In this episode, Sarah discusses her devastating story of losing a child to neonatal HSV and her work in raising awareness of neonatal HSV.

    Featuring Emma Lim and Christo Tsilifis with Sarah de Malplaquet, parent of Kit, and founder of the Kit Tarka Foundation.

    This podcast is a collaboration between the Royal College of Paediatrics and Child Health (https://www.rcpch.ac.uk) and Medisense (https://www.medisense.org.uk).

    RCPCH The paeds round
    Neonatal herpes simplex virus disease – THANKS (think hands and no kisses) Transcript of podcast – October 2023

    [music, with snippets]

    Emma: Us not being open and talking about herpes so that we can do something about it, have all led to this awful tragedy that is part of your family history.

    Sarah: Don't let anyone hold your baby without washing their hands, and, and don't let anyone other than the parents kiss your baby.

    [music ends]

    Emma: Let’s get down to rounds. Hello, my name is Emma Lim and I’m a consultant paediatrician at the Great North Hospital, and I would like to welcome you to The paeds round, your regular podcast from the Royal College of Paediatrics and Child Health

    Emma: So Sarah, well welcome today and it's really lovely to speak to you. Would you just like to introduce yourself and tell us why you're here?

    Sarah: Yep. I'm Sarah de Malplaquet. I'm the CEO and founder of Kit Tarka Foundation, which is a charity I started after the preventable death of my son Kit when he was 13 days old. Um, and he died from neonatal herpes.

    Emma: First of all, Sarah, I just want to thank you for coming because to do what you did to start a foundation and to continually talk about what must be one of the most distracting things to ever happen to a mother is, is just so hard. If we go about how many years ago was this now?

    Sarah: So he died in September, 2017, so he should be five now.

    Emma: And how did you feel when you were pregnant with your first child?

    Sarah: Um, absolutely over the moon. So we were really lucky. Um, and yeah, the pregnancy was pretty smooth. I mean, the usual like aches and pains and heartburn, but absolutely no concerns throughout the whole pregnancy until the very end.

    Emma: And when was it that you had some inkling that things weren't quite right?

    Sarah: when I was around 39 weeks, I actually got a rash on my fingers. Um, And this was actually a red herring that because I had a rash, I was taken into hospital and tested for, um, icp, cuz it was like an itchy rash. It actually turned out to be pom, it's, it called conflicts the, um, eczema. So that was a complete red herring. But because I was in hospital and my blood pressure was checked as a matter of course, and it was found to be high. Um, and that's when kind of alarm bells ring for the doctors. I mean, I'm absolutely convinced it was the white coat syndrome and However, once I was on that kind of intervention train, um, Because it was so close to the end of my pregnancy, I was kept in hospital and an induction was recommended.

    Emma: So you'd had this wonderful pregnancy. It was your dream. It had all come really quickly and nothing had gone wrong, right till the end where you had a little rash, you got admitted and was found to have high blood pressure, which you reckon was seeing doctors and being in hospital.

    And from that point on, it all became quite medicalized and you were booked for an induction. Do you want to tell us what happened next?

    Sarah: Yes. So the planned home birth I wanted was out of the window. Um, absolutely devastated, but obviously wanted to follow what was right. And obviously it was a, the pre-eclampsia risk that, um, doctors were concerned about. I was really, really terrified because all I'd heard from friends who had had inductions were absolute horror stories.

    And that went ahead with it had a PEs, the Pessie. Um, but within an hour or so, I started getting contractions and they were absolutely, unbelievably painful. Um, and they didn't stop.

    And on top of that, I had a reaction to the PEs. So the insides of my vagina were incredibly, incredibly, like sore and painful. So any. Investigations down below were agony. But I wasn't really dilating at all at this point. I mean, to me, my body just wasn't ready to give birth.

    Um, and probably the fat that I was so tense didn't help either. Um, anyway, we cont continued for a few hours. So, however, during this time, kit was being monitored. Um, and at first was, was thought to be okay. Um, but then there were some concerns around Kit. So at that stage it was suddenly category one cesarean section, and I was rushed into the operating theater

    But Kit was born and he was born healthy and he was absolutely perfect, sweetest, sweetest little boy. Um, started crying straight away, had his AGPAR test and scored 10 out of 10. No concerns at all. Um, was given to me and James were doing skin on skin. And it was all like, I mean, I'll say it was all amazing, but it was, it wasn't because I was still in agony and it was, um, the exact opposite of the birth that I had planned.

    And, but still we had our son and he was amazing. Um, and we thought that was the end of the nightmare. Um, and his blood sugar was found to be too low.

    Um, and also at this stage he was a little bit cold as well. So there, there was some attempts to try and bring it back up. However, it was decided that he was at risk at this stage of getting ill. So he was taken into the special care baby unit.

    Emma: So Sarah, You'd been through this awful birth, which was the exact opposite of everything you'd hoped for, which was a nice home birth. But as you said, you had the boy of your dreams, you were, it was everything. Seeing Kit. Had you thought what might happen after your baby had been born and had you ever considered that your baby might not be Well?

    Sarah: Um, it just didn't cross my mind. And also, I guess at that stage we had met Kit and he looked like a very healthy, happy. He almost looked like he was smiling in the, his first couple of hours.

    Um, he looked like a healthy baby. So even when he was taken into special care, I didn't think he was ill. And actually I was just desperate to get him home. Um, I went along with it, but till now I wish I hadn't. I wish I'd just taken him home and he might have still been here today.

    Emma: So is this bit, you've been through this hellish labour, but you've got your baby, he's amazing and he just has slightly low blood sugars and he is gone to the special care baby unit and all you want is to have him back. What happened next?

    Sarah: So he was taken upstairs. I was physically unable at that stage to go with him. I couldn't move. Um, so we decided James should go up with him, my partner. Um, and I was downstairs and that was absolute torment. I felt like he had been taken away from me. It really felt like that, like almost against my will, although of course it wasn't against my will.

    We'd given consent, et cetera. But it felt like my son had been taken away. Um, and it was a, it was, wasn't until another few hours that I think James managed to get a wheelchair, managed to put me in the wheelchair and take me up to see Kit and pretty sure I was crying for most of those hours. Just so sad that after everything we'd been through and then for this to happen.

    Um, and also I was kind of, yeah, pretty sure that he wasn't ill. I just really wanted him home.

    Emma: And you were right because, um, they gave him some feeds and then he came back down to you a bit later, didn't.

    Sarah: He did. It took six days. So although he had a trip downstairs still whilst he was in the special care unit, he was a, he was taken downstairs to see me at some, at one point when again, I wasn't well enough to go upstairs.

    Um, and it was during that time where there were red flags that we now see as red flags, but at the time we didn't know. So kind of from day three, four, um, he was really, really sleepy. So he wasn't waking up for feeds.

    I think he only woke up for about 20 minutes a. . Um, I was asked, I asked doctors, nurses, midwives, like, is this normal? You know, everything you hear about newborn babies is that they hardly ever sleep. They cry all the time. And Kit was hardly crying. Barely at all actually.

    Um, and I was just told that he was a sleepy baby. Some babies are sleepier than others. Um, boys are sleepier than girls. Maybe it's because I'm allergic to codeine, so I'd have morphine at the birth. So maybe it was a after effects of morphine in my breast milk cuz I was at this stage trying to breastfeed him, but also pumping milk for the, um, bottle feeds.

    Um, maybe it was that he was having too much milk because they're trying to get his blood sugar up. , there were all these reasons given, and I, I know my Google search history at the time is just like, how much should baby sleep? Why is my baby not waking up? Et cetera, et cetera. Um, but I was reassured that that is normal.

    Emma: So Sarah, you told me that even though Kit was upstairs on the special care baby unit, you were worried that something wasn't right because he was sleepy and he was hardly crying and you even described how he didn't cry with painful stimuli.

    Sarah: Yes. Yeah. So that was another thing that we were asking about. I mean, I think at this stage I wasn't necessarily worried. I was asking the questions, but because I was told it was normal and there was nothing to worry about, it was kind of Oh, okay. Even though that didn't, it didn't feel right.

    We were consistently told that it was fine. he didn't respond to pain at all. So he didn't wake up often. He didn't wake up for the heel pricks that he was having, what feels like thousands of, um, and even when his cannula was, were being inserted, he didn't respond at all.

    And, and I remember talking to James and talking to one of the nurses about it, like, why, why is he not responding?

    Emma: So you are telling me that when somebody put an intravenous cannula, so uh, a line into his vein to give fluids, he didn't wake up and he didn't cry.

    Sarah: Yeah. Correct. So if he, if he was awake at the time, which was rare, he. He didn't cry. Um, didn't wim her, didn't yeah, didn't flinch. Which we, we thought was unusual, um, but we're told it was normal.

    Christo: Sarah, at this point, um, what communication, uh, had happened between you and either kind of midwives or the nurses and doctors on the special care baby unit to explain, um, because by this stage he'd been up on the unit for a few days, is that right?

    Sarah: Yeah, so at this stage it was just a case of he, this is very normal for even full term babies born by caesarean.

    Um, he's just taking a little bit longer to get stabilized. Um, we're being extra cautious to make sure he's okay. Um, and it wasn't until he was six days where they were happy enough with all the observations that he could then get discharged to the postnatal ward.

    Emma: And you did manage to get your son home, didn't you?

    Sarah: Yes. So he was down with us on the postnatal ward, um, on day six, I should say. This was pre covid, so thankfully I was in the whole time cuz I was still quite poorly. But James could stay with me

    So we, we we're absolutely delighted to get kit back to the postnatal ward. He fed quite well, breast fed quite well on his first night there. Um, but the next day there were some concerns about whether he had jaundice or not.

    So he was put under that special light, um, but that stabilized quite quickly and he was actually allowed home on his seventh day.

    Emma: And how did it feel to get him home?

    Sarah: Um, it was really mixed feelings. I was, we were absolutely so happy to have him home. Um, but at the same time, I was desperate to establish breastfeeding and it wasn't happening and I was in agony and. And that's, I think that that just felt like the only way I could help him at that stage, and I wasn't able to do that.

    Emma: Why was it so painful to breastfeed? So with something else that worried you then wasn't there?

    Sarah: Yeah, so I think it was about day four or five when I started getting blisters on my nipples from one of them particularly.

    Um, and at the time I raised this with the midwife and also one of the neonatal nurses, and she got one of the breastfeeding specialists to come and speak to. Um, and at that point the blisters were thought to be as a result of using the wrong size like breastfeeding found.

    Um, I was googling as usual, suspected flush. It was tested for flush, um, found not to be flush. Um, and what we now think is, you know, that's, that was a sign of HSV that perhaps kicked had transferred to me, and that was one of the signs that wasn't picked up.

    Emma: So Sarah, these blisters, they were very painful, weren't they?

    Sarah: Yeah, really painful. So it was, it made. Expressing milk. Really difficult, very challenging.

    Emma: And how did they develop or heal?

    Sarah: it just started as like red soreness, which I guess is expected with breastfeeding. Um, and then it was only a bit later that I noticed some blisters.

    Emma: Um, and just at this point, having saw nipples when you start breastfeeding, I think that's really common.

    But having blisters is quite unusual. And you'd never had blisters before and you'd never had cold ulcers either had.

    Sarah: No, I've never had colds in my life or blisters anywhere that I can remember.

    Emma: Yes. You, you, I know this is a bit personal, but you've not had genital herpes either.

    Sarah: No, absolutely not.

    Emma: Did you think it was anything else at the

    Sarah: time? Uh, I didn't know what it was. I, I, I took what I was told to be the truth.

    Emma: So we'll come back to those funny blisters a bit later. But meanwhile, you've been struggling to breastfeed.

    It's been agony. Kit has got home, but he's still sleepy. But things weren't right. .

    Sarah: Yeah. So after we got home and kind of announced his birth to the world, which we hadn't felt comfortable doing until then

    Um, but we did, and then it was that first night where Kit just didn't really wake up at all. you know, we had our instructions about he has to take this much meal every two hours. I think it was at the time. Um, because Kit had been so sleepy, we'd been given techniques to wake him up, like strip off his baby, Glu grow, um, blow on his face, tickle his toes, but none of these things were working.

    And he had hardly any milk at all that first night. And then the community midwife came round the next day for her, like day one visit. and I told her about my concerns and at this point he started to look a bit more yellow again. So I showed her a photo of him the night before and him that day, and she agreed that he did look a bit more yellow.

    Um, she said in every other respect, he seems like a healthy baby. His tone is really good. Um, he looks really well, but she agreed he does look a bit more yellow. Um, so she recommended then that we take him back to the children's hospital to check again for jaundice, and she thought that the jaundice might be the cause of his tiredness.

    Emma: just as you think that you're ready to get the congratulations and that your baby is back home with you, he seems more unwell and jaundice and sleepy, and you take him back to hospital. And what happened next?

    Sarah: So we got to the hospital and saw a doctor really quickly. Um, and that doctor immediately recognized something in Kit that he was a poorly baby, um, and admitted him straight away and he was put back on antibiotics and his infection markers were high. Um, within a few hours, his care was escalated to the higher dependency unit in the children's hospital. Um, and he was, you attached to all the wires. Um, and he remained there for the next five days until he was 12 days old.

    Christo: How did it feel, Sarah, to go from, uh, having your delivery and the first few days of Kit's, life being very medicalized to then going home, uh, and then to be thrown back into, um, another very medical and clinical, uh, situation with, um, high dependency care?

    Sarah: Um, getting home was so nice. , I was just, from the minute I was admitted to hospital, I was desperate to get home and then subsequently to get Kit home. And then to go back, I, when I went back, I thought it would just be, he would just be under the lights for a little bit longer and then he would, we would have him home again.

    But when he was admitted, yeah, it was like all our nightmares come true. Really. And just absolutely devastated to be back there.

    Emma: So Sarah, you talk about how you've been at home and you've just been a bit sleepy and not feeding and you come back in thinking perhaps you'll just need the lights. But in fact, he needs antibiotics, he needs fluids. He's on the high dependency unit. Does anybody know at this point, what's the matter with kit?

    Sarah: Lots of tests were done. So he had a lumber puncture. Um, There were various theories, like maybe it's a metabolic condition, maybe he's allergic to my breast milk. Cuz they, there seemed to be a pattern there, um, I guess all the usual tests that at no point was Hs feet suspected or tested for.

    Emma: So Kit is now seriously unwell and he is getting a lot of treatments, but he is not getting better, is he?

    Sarah: So at this stage, the doctors were still telling us that we would be home in, it was days and then it was weeks, but it was, we will be home soon and this will just feel like a bad dream. It was a difficult start to Kit’s life, but we'll have our little boy in our arm soon enough at home.

    Christo: When you were speaking with the doctors and they were trying to find out more information about what might have led kit to be unwell, did they ask questions about your health, so about infections prior to delivery, or about any warning signs that with retrospect might have related to hsv?

    Sarah: No, they didn't ask anything.

    Um, so the, the, the big warning sign that was we there, which I've already talked about, is the blisters on my nipples, and they were well aware of these. In fact, James, who was my champion, was fighting for me to be seen by anybody because I was in so much agony from these blisters. Um, but they were never connected to kits, welfare kits, health.

    Emma: So at this point, you and Anny, you've still got these funny blisters around your nipples and kits, despite everything that is being done for him is not getting any better.

    How did things change from there on?

    Sarah: So on his 12th day, it was by this stage he was having seizures, um, struggling to breathe grunting, which is the medical term for what we just thought as he just sounds like he's in a lot of pain.

    But then he just start, he did start to look really unwell and really sad to be honest. . Um, so yeah, when he was 12 days and he was having all these uh, deterioration, they decided that he needed to be taken to the intensive care unit at the Alina.

    So he was put in an induced coma and he was rushed up to the hospital there. And

    Emma: How did that feel?

    Sarah: So that was really difficult. That was the first time anyone had mentioned that your son might die. So that was an absolute shock.

    We had to go behind kits in the car cause there wasn't room for two of us in the ambulance. Um, that alone was really difficult because Kit had always had one of us by his side until that point, except for his lumber puncture, and that was the only point that he hadn't had a parent by his side.

    Emma: So you described Sarah, how, um, this is the first time you suddenly think, actually Kit is seriously ill and he may not survive, but so far nobody really knows what's wrong. Did they have some ideas when you got to the Alina Children's Hospital, which is in London?

    Sarah: Yes. So when we first got there, one of the first things a doctor said to us was, have either of you had a cold?

    So recently, because I suspect this could be herpes infection. So he sees several, often tragic, usually tragic cases by the time they get to him, um, a year. So Hal Kip presented that kind of overwhelming infection. Uh, the, he'd had, I think he had liver failure. So I think that was a warning sign for the doctor.

    Um, and that was the very first time that we had heard the word herpes and were like quite shocked to be honest.

    Emma: And what was your first thought when you were told he might have herpes?

    Sarah: Um, I've never had a cold saw in my life.

    We kind of moved on like I did Google it, but. We kind of dismissed that as it wasn't the cause at that stage, I think.

    Emma: And things didn't go as you hoped. Kit didn't get better.

    Sarah: Um, no. So by the time he was admitted into intensive care, they were just doing all they could to save his life.

    They did send his blood off to be tested for various things, including H S V, but they knew that even if it was H S V at this stage, like they, it's too late to be just starting antivirals.
    They needed to stabilise him first. Um, and it seemed like they had stabilized him, um, and recommended that we go downstairs and try and try and get some sleep

    and then we got a phone call saying, you need to come upstairs. And so we did. We kind of knew what we were gonna find, I think, at that stage. Um, and we found a doctor desperately giving CPR ticket to try and bring him back to live. Um, but it didn't work.

    And he, yeah, he, he died shortly afterwards.

    Emma: Sarah, I'm so sorry. This must be so hard for you to talk about this. I think the thing that makes it so difficult is that horrible, inevitable feel that things are getting worse and you still don't know why at this point. Did they ever find out?

    Sarah: Yes. After he died, We held him for a little bit, but by that point he didn't feel like kiss anymore.

    I remember saying to James like, this isn't our little boy. He was really swollen. Kit was so like delicate and perfect, He, he just didn't look like him anymore and he had died so he didn't feel like our boy anymore. Um, we were taken home shortly afterwards, so we had to leave kit there.

    Um, and we got a knock on our door of a couple of hours after we got home. A pair of police officers because at this stage it's an unexplained child death. Um, so officially we are suspects, I guess, and I absolutely don't fault that system. That's what should happen in a circumstance like this, but it was an extra.

    Kicking the teeth to us. Um, they interviewed us. Um, left still had no answers. And it was not until the next day the police officers came back. They'd heard from the hospital that he had a diagnosis of H S V one, um, and that was what was gonna be put down as a cause of death. So the HSV had caused the organ failure, um, because it was a disseminated herpes version.

    Emma: So Kit had died of type one herpes sinex virus, the virus. That gives people simple common colds.

    Separate quote: we would ask any clinician working with newborn babies to not work clinically if you have a cold sore.

    Emma: Uh, thank you Sarah. This is a terrible story and outta that terrible story, you've actually done amazing things, which is start a charity in Kit's name that champions working with hospitals and foundations around herpes simplex for the Kit Tarka Foundation.

    Do you want to tell us a bit about it

    Sarah: I did speak to a number of larger charities to see if they would help with what at the time was an obvious gap in the research. So the latest, the latest BPSU study that had been published at that time was 25 years old. There was an interim, interim one, which hadn't, I think it only got published a couple of years ago.

    Emma: So Sarah, once you'd started thinking about it, you actually found there was a big gap in the knowledge around herpes simplex and how it affects babies. So there wasn't any recent research or studies, there wasn't much for public awareness and there wasn't enough for clinicians to be aware of what they should look out for

    Sarah: Um, obviously there was a huge gap there amongst health professionals, doctors, um, on that side, what to look out for in babies, that kind of non-specific signs.

    It's not always a bacterial infection. It could be a viral infection. Um, and on the other side, there was a huge gap in knowledge amongst parents.

    Emma: That's amazing. And I think you're so right. I think viruses are really neglected and you've done more than that because you've also done a public awareness campaign called Thank. Haven't you, do you want to tell us a bit about that?

    Sarah: Uh, yeah, so off the back of that survey we launched the Thanks campaign, which is Think Hands and no Kisses. Um, so it's all around the importance of good hygiene around newborns. Um, a lot of parents told us that although they let other people kiss their baby and don't wash their hands, they're not comfortable with it and that they don't want to be seen as overprotective parents or they feel awkward having these conversations. So we produce all these resources, posters, um, postcards, et cetera, and social media campaigns who kind of empower parents to make those decisions for their vulnerable newborns.

    Emma: have you got three top tips or three top messages that you would like new parents to know?

    Sarah: Um, don't let anyone with a cold sore near your baby. Don't let anyone hold your baby without washing their hands, and, and don't let anyone other than the parents kiss your baby.

    And this might be number four, but anyway. Any expectant parents. If you have any known history of genital herpes, then please, please, please talk to your, um, midwife about it or your obstetrician. Um, don't be embarrassed. 25% of the population have genital herpes infections. Um, and we know that's actually is the most common way that babies contract HSV.

    Emma:. This is such a tragic story and I think that your message of parents not knowing what is the right thing to do as in washing your hands and not exposing your baby's cold source, and clinicians not recognizing these nonspecific symptoms and treating it early and thinking about hsv herpes simplex virus, and.

    Us not being open and talking about herpes so that we can do something about it, have all led to this awful tragedy that is part of your family history.

    Sarah: Um, another thing that really surprised us from our survey was that only 15% of our respondents were us during pregnancy about previous genital herpes infections.

    Um, I'm nearly 50% of birthing per appearance with a known genital herpes infection said it was not discussed at all during, with a health professional during pregnancy.

    Emma: And that survey led you to lobby and change a whole lot of things, didn't it?

    Sarah: Yeah, so one of the main changes that's come out of that is the nice antenatal guidance We, um, campaigned for that to now include information on herpes to be given to all expectant parents, and that's in there now, which is brilliant.

    Emma: So Sarah, it's been a tremendous privilege to talk to you and to hear your story and hear about Kit, and I think that you need to reflect that it's, you one person has changed so much. You've changed the way clinicians think, you've changed how parents think, and you've changed policy at a national level, which is an incredible achievement for any one person.

    [music]

    This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

    [music ends]

  2. Episode 2: Neonatal herpes simplex virus disease – mother-to-child transmission (released 5 December 2023)

    Special guest Dr Hermione Lyall joins our hosts Emma Lim and Christo Tsilifis to talk about maternal to child transmission of herpes simplex virus and the importance of early detection of this rare condition.
    Hermione is a paediatric infectious diseases consultant at St Mary’s hospital in London and brings a wealth of experience to this discussion. She has a special interest in congenital infections and has worked tirelessly to prevent their transmission, which she discusses at length in this second of our three-part series on HSV.

    [music, with snippets]

    Emma: When you see these mothers and parents, and you have any hints that it could be herpes simplex, you need to make everybody horrified. You need to have these babies clean and assessed clinically.

    Hermione: People haven't seen enough of it, to have it in their mindset when they see a sick baby. So there may have been a history of exposure, from the mother, from the grandmother, from anybody. There may have been a history of exposure, but people haven't asked.

    [music ends]

    Emma: Hi there, I'm Emma Lim, a consultant paediatrician at the Great North Children's Hospital. You're listening to The Paeds Round, a monthly podcast and the Royal College of Paediatrics and Child Health. Every month we invite experts to answer important questions on the issues that matter in paediatrics, from areas as wide ranging as obesity, to social media. So, thanks for joining us on our rounds.
    This is our second episode of our special edition on Herpes Simplex or HSV, and it is my great privilege to have our next speaker here with us. Dr Hermione Lyall, and Hermione is going to talk to us about maternal to child transmission of herpes simplex virus (HSV).
    Hermione, would you like to tell everybody what you do and where you work?

    Hermione: I'm a paediatric infectious diseases consultant and I work at St. Mary's in London. I have been doing this for quite a number of years, and I have particular interest in congenital infections and trying to prevent mother to child transmission of congenital infections. And that includes a number of viruses and also bacteria, and of course HSV.

    Emma: Thank you. I always feel that viruses are somehow underrated and undera ppreciated.

    Hermione: Okay, so I think one of the biggest issues here and we're really talking about neonatal Herpes Simplex, infection that comes on in the baby after it's born, rather infection that it's actually had in utero for some time and that it is born with, which is congenital herpes simplex, which is exceedingly rare. And I have looked after two children with that condition over the last 25 years, and that is devastating destruction of the brain and other organs by the infection, but that is an extremely rare presentation of herpes simplex.

    Emma: Hermione we're talking about two different scenarios here. Congenital herpes simplex, which is devastating and very rare, and neonatal herpes simplex which are going to tell us more about now.

    Hermione: So even neonatal herpes simplex is still a rare condition. And this is one of the biggest problems, that people haven't seen enough of it to have it in their mindset when they see a sick baby. Neonatal herpes simplex has been increasing. And Katie can tell you more about the latest BPSU (British Paediatric Surveillance Unit) survey. But you know, it's still only somewhere between maybe 5 or 70 babies per 700,000 live births. So that means that most paediatricians, unless they're in a very specialised unit, will not seea baby with neonatal herpes simplex during their training.

    Emma: And so, there's rare occasions, and I think it is really hard to remember this. What do you want them to think about and ask about?

    Hermione: So, we want to think about women who are pregnant. Now, unfortunately, if you look at it from the baby's end, about 80% of the time when a baby has neonatal herpes, nobody has picked up that the mother had any symptoms, or that there was a risk of infection. And indeed, the infection doesn't always come from the mother. In somewhere between 70% or maybe even up to 20%, the infection may have come from someone else, whether that wasa healthcare worker, or a family member, or somebody else who has been involved with the baby.

    So, the classical thing that people get taught about is a woman delivers with lesions, ulcers, or vesicles at the time of delivery, and there you think, oh my goodness, could this be herpes simplex? But the chances of that happening are actually extremely rare, and even if a woman has herpes simplex at the time of delivery, she may have no lesions at all. She may be systemically unwell; she may not actually develop the lesions until a few days later. She may have very painful vaginal grazes or symptoms a few days after the delivery, and people may be saying, oh this is thrush, or this is bacterial infection. And because they don't see blisters, they don't think of HSV.

    Emma: Alright, so you were right, all neonatal illness starts in pregnancy. So we need to be really mindful of thinking about asking mothers about any rashes they've got, any blisters they've got, any blisters on their fingers, as well as in their vulva or vagina. But more importantly, what you're telling me is that most of the time, these babies turn up with very nonspecific symptoms, and really no history of being exposed to herpes simplex virus.

    Hermione: Well, even worse than that, people don't ask. So, there may have been a history of exposure, from the mother, from the grandmother, from anybody. There may have been a history of exposure, but people haven't asked. And they may not have asked the right question, because the mum may have been really sick with a high fever and very unwell, and it's all assumed to be bacterial infection, but it could just as easily be primary herpes. That's just the situation if you're really looking at it around the time of delivery, but we also have to think about the weeks and months before that. And if a mother has herpes simplex genital infection in the weeks in the third trimester, so say after 28 weeks, her baby is still at risk. Because it takes a bit of time to produce an antibody response. She needs to be treated; she needs to be referred to the GUM (genitourinary medicine)

    service. She needs to get on to acyclovir and she needs to stay on acyclovir until the time with the delivery. And indeed, if it's later in that third trimester, she should be offered a caesarean section.

    Emma: Is there difference between women who are meeting herpes simplex for the first time and a reactivation?

    Hermione: Okay well, it's not straightforward either. If you had your first herpes earlier in that pregnancy, and you could be having a reactivation, your baby is probably still a bit more at risk, so you needed to have been treated then. And you also needed to have been offered the opportunity to go on to prophylaxis in good time for the delivery. The current RCOG (Royal College of Obstetricians & Gynaecologists) and BASH H (The British Association for Sexual Health and HIV) guidelines only suggest going on to prophylaxis from 36 weeks gestation.

    But there are two really important points here. One is that herpes simplex itself increases your risk of having a premature delivery. And in addition to that, the babies who become sickest and are more at risk of dying from herpes simplex are premature babies. So in our view, actually women should be offered to go on to prophylaxis from much earlier. There's a recent Ugandan study, which looked at this, and in that study, women went on to treatment from 28 weeks. In the original studies, women who had antibodies protective antibodies, their babies had a much lower risk of complications. But I don't think it's necessarily so easily black and white. And I think women, especially women who've only had herpes simplex in the last year or two they need to be offered prophylaxis.

    Emma: So the Royal College of Obstetricians and Gynaecologists (RCOG) guidance and the British Association of Sexual Health and HIV (BASHH) suggests we should start acyclovir prophylaxis from 36 weeks. But know that acyclovir is safe, it's relatively easy to take, and it could prevent devastating disease and death like we've heard from Sarah.
    Why do speak that people aren't offering prophylaxis so often?

    Hermione: I think, firstly, they don't ask the question, they don't ask if women have had genital herpes or not. Secondly, as we said, there are plenty of people who may have had genital herpes and they didn't know it. I think we don't routinely tech check women serology and it would need women to be referred to GUM to actually have this properly assessed, which I think very rarely happens.

    Emma: People don't want to disclose it? You must remember that sometimes people's partners don't know that they have genital herpes. And I also think in the general public, there is a not an understanding that this is a treatable condition, and that this may cause illness in a neonate. So I think these things are really not well understood. I think you've put how difficult the situation is in diagnosing and treating herpes simplex in pregnant mothers. But when it comes to it, and you're faced with a child, who potentially has it, what should we be thinking about at that point, and who should we suspect of herpes simplex infections?

    Hermione: Okay, so I am going to just usesome cases that I've been involved with, which I think are very clear examples of where we can think better. So, here's a baby who was born normal delivery to a teenage mum, and bear in mind actually, teenage mums have a

    higher risk of having herpes simplex as a primary infection. Normal delivery, everything was fine. And about four or five days the baby was noted to have some crusty lesions on the head. It was taken to primary care, a diagnosis of staph aureus infection was, made the baby was started on flucloxacillin. New blisters and crusty things continued to appear, and a couple of days went by,and it wasn't really improving. Then it just gradually settled down. And a few days after that, the baby was found in status epilepticus, and was admitted to intensive care. And this baby had devastating brain damage from herpes simplex and encephalitis. The baby has four limb cerebral palsy, is cortically blind and his life has been changed completely.

    Now, if that first person who saw those crusty things on that baby's head had thought, this could be staph aureus, but it's a presenting part with crusty lesions, and maybe some little blisters this could also be herpes simplex. If that person had thought about that, and admitted that baby, and done the investigations, and started that baby on acyclovir, it's quite possible that that baby would only have presented with what we call skin, eye and mouth disease, and would not have gone on to develop and encephalitis with its devastating outcome.

    Emma: As a quick summary, when is the highest risk period of being infected with herpes simplex virus during pregnancy?

    Hermione: I think the most dangerous time is where the maternal infection happens right at the end of pregnancy, so that the mother is by remake, and there's a placental transfer a virus, or the mother has lesions in the birth canal, and the baby picks them up at the time of delivery. So this is the most dangerous time.

    Emma: And you said teenage mothers were more risk of herpes simplex virus. Who else does more risk?

    Hermione: So young women, women with HIValso are more at risk and it also depends on your ethnic group. There are some ethnic groups that are more risk as well. So young women, Afro Caribbean women also. But fundamentally, it's all women who are having sex. So, and because it's a very rare condition, you have to think about it for everybody.

    Emma: And let's face it, if you're pregnant, you must have had sex at some point! Just as a summary, you and I think about acyclovir like vitamin A, like who shouldn't take it? But, what are your recommendations?

    Hermione: My view on this would not be the same as the current RCOG and BASHH guidelines, because I think if you have a woman who presents with herpes simplex for the first time in pregnancy, you should probably go on to acyclovir from then and continue on it right to the end. If you have a woman who has recently become infected, or whom for some reason is diagnosed to be infected, she should start on the treatment, especially if it's beyond 24 weeks gestation, and stay on it.

    Emma: I think that, as you say, taking acyclovir it's not unsafe, it's not going to harm their child. I think we're very few reasons not to.

    Hermione: And actually, we would normally give valaciclovir every year, which is the pro drug of acyclovir, and only has to be taken twice a day and the dose that you would use for prevention of herpes simplex is very, very well tolerated. But obviously women need to be advised to keep well hydrated, because you know, it's renally excreted so you want to make sure that they are in a good hydration state.

    Emma: Okay, so my last question is, of course, caesarean section. Talk for me about the risks and benefits of caesarean section in mothers with herpes simplex virus.

    Hermione: So, the classical situation is if you have a woman who is found to have vesicles, or ulcers at delivery, and it's considered that she's having primary herpes at the time of delivery. Trouble about that is that you have to go on your clinical expertise, because you won't have time to send a swab to the lab, and you won't have time to check the mother's serology. So, you have to make a clinical decision about that, and as we said, very often women don't have obvious genital lesions, so making that diagnosis of gentle lesions at delivery is really difficult. In addition to that, if the membranes have already ruptured, the longer they've ruptured for, then the less likely the baby is going to be protected. So, people do say that if the membranes have ruptured for less than four hours, then it's still reasonable to do a caesarean section.

    If you know a woman got primary herpes a few weeks before, in the third trimester, then you would definitely want to offer her an elective caesarean section, and she should obviously also be on her acyclovir prophylaxis. If you have a sick woman at the time of delivery, and you're worried that shecould actually be viraemic with herpes simplex, then you should be offering that woman to be on intravenous acyclovir.

    There are all these different kinds of nuances to it. And what it really means is that you need very good interaction between obstetrics, midwifery, virology, adult GUM, neonates, PIO everybody needs to be working together putting their heads together and thinking.

    Emma: I think that's so important. You've talked about the risks in premature babies, you've talked about premature ruptured membranes, and you've talked about really sick women that could be viraemic, women who have had really recent herpes simplex virus infections, and the need for them to have really joined up care between all these different departments. Do you have three top tips for us?

    Hermione: Okay, I think the most important thing is that if you have a woman who has severe pain in the vaginal area, a woman who is unwell and everybody thinks she's got Group B strep, but the cultures are negative. If you've got a woman who has new lesions in the third trimester, around the time of delivery or after the delivery, you still have to know that there is a risk to the baby of herpes simplex infection. It's always putting the kind of bits of the jigsaw puzzle together, and it's asking that question to the woman herself, about exposure and to the neonatal team and to the kind of obstetric team.
    People have to think about it.

    The particular things that make me worry are any baby with abnormal LFTs (liver function tests), any baby in DIC (disseminated intravascular coagulation), any baby with abnormal neurology. All of these babies should be given acyclovir until you've either proven something else or you've got HSV. We should also be making sure that we get rapid test

    results, so we should get biofire or rapid PCRs (polymerase chain reaction) back on CSF (cerebrospinal fluid) from these babies. And like you said, you need to send a blood PCR, but we can get rapid results, which is really helpful.

    Emma: I think that this is really important. First of all, all sick babies deserve the right to have some acyclovir. The other thing for me is your last point is that it's quite easy to start acyclovir but it's really hard to make a decision stop. And we will never know if we can safely stop if you haven't sent tests off. When you see these mothers and parents, if you have any hints that it could be herpes simplex you need to make everybody horrified, you need to have these babies seen and assessed clinically, you need to have done all these investigations and possibly started them on acyclovir before they come to the stage where it's irretrievable.

    Emma: Thank you very much Hermione for a fantastic episode. The Royal College of Paediatrics and Child Health, British Association of Sexual Health and HIV Guidelines for the Management of Herpes Simplex in Pregnancy and Neonates are currently out to consultation. There are some changes and, in it, the advice for prophylaxis in pregnancy has been updated to: please start acyclovir from 32 weeks generally or 22 weeks in any women where there is a suspected risk of prematurity. For more information, please look at: www.bashhguidelines.org

    [music]

    This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

    [music ends]

    Emma: The views, thoughts and opinions expressed in this podcast relates only to the speaker and not necessarily to their employer, organisation, the Royal College of Paediatrics and Child Health, or any other group or individual.

  3. Episode 3: Neonatal herpes simplex virus disease – Management (released 19 December 2023)

    We’re back for episode 3 of The Paeds Round with special guest Dr Katy Fidler joining our hosts Emma Lim and Christo Tsilifis to talk about the management of herpes simplex virus. We discuss stigma, when to worry about HSV, the importance of early detection and what to look out for. Katy is a Paediatric Infectious Diseases Consultant in Brighton and a Reader in Paediatrics at Brighton and Sussex Medical School. She also currently runs the national study on neonatal herpes through the BPSU. This is the final episode in our 3-part mini-series on HSV and we’ll return in the New Year to discuss fever.

    [music, with snippets]

    Katy: We can treat it if we know early enough.

    Emma: There is such a stigma about herpes simplex virus.

    Katy: Your result is only as good as the swab you take.

    [music ends]

    Emma: Hello, welcome to The Paeds Rounds. We host a regular podcast from the Royal College of Paediatrics and Child Health on key issues affecting paediatric practice. My name is Emma Lin and I'm a consultant paediatrician at the Great North Children's Hospital in Newcastle upon Tyne. I'm here today with my co-host and colleague, Christo Tsilifis, and this is our final episode of three on herpes simplex virus (HSV) and today we're looking to round up our learning from what we've heard before, from Sarah and Dr Hermione Lyall.

    So, let's get started with today's round and hear from Dr Katy Fidler, a great friend and colleague of mine who I've known for a very long time. Katy, would you like to introduce yourself?

    Katy: Hi, Emma. I'm Katy Fidler, I'm a paediatric infectious disease consultant in Brighton and a reader at Brighton and Sussex Medical School. And, also I currently run the national study on neonatal herpes through the BPSU (British Paediatric Surveillance Unit).

    Emma: Katie, what do you want to tell doctors about when to worry about HSV and what to look out?

    Katy: Well, and the neonatal HSV can present in one of three different ways: with skin, eye and mouth disease; with a CNS (central nervous system) disease, so encephalitis; or with disseminated disease. And for the first two of these, presentation may be easy to recognise, because they have skin lesions or they may present with fevers and seizures. But it's this last group with disseminated disease that is really, really difficult to recognise, because they present very nonspecific symptoms, of poor feeding, lethargy, they may present with a sepsis picture, but everybody will think they've got bacterial sepsis, and not think about treatable viral sepsis.

    Emma: Thanks, Katy. I think the difficulty is that basically babies don't present in many different ways when they either get a fever, or they cry, or parents come in and say they're just not themselves. So, is there any time you shouldn't use acyclovir? Because it seems to me that it will be really hard to unpick beforehand whether this is a HSV infection or not.

    Katy: I think that's a very good question Emma, about when you shouldn't use acyclovir. From an infectious disease point of view, we would like to consider HSV and starting acyclovir in pretty much the same way as you do antibiotics, that you start and then you can stop when the cultures are negative antibiotics, or the viral PCR (polymerase chain reaction) tests are negative, but HSV. However, we have to put that into the context of many, many babies presenting to the emergency department and how that would affect 1000s of babies per year.

    Emma: I think that brings us back to that reminder, that Hermione talks about, to take a really good history and to talk to the parents. I think the second problem is that we don’t have good point of care tests. So, what we really would love is a point of care tests that will tell us if a child has HSV (herpes simplex virus), when you see them is that slightly sleepy and lethargic, possibly febrile and other moments when to care that don't exist like that. But what tasks can you do, or what tests should you Katy?

    Katy: Well, I think the most important thing is to go back one stage, and even before the testing, you have to think of the diagnosis to send off the test. And we've done studies to show that when you ask registrars what diagnoses they consider in an unwell baby presenting in the first week of life, only 3% think of HSV, whereas everybody will think of bacterial sepsis. For instance, everyone thinks of listeria, however, listeria is not nearly as common as HSV in the neonatal population.

    Emma: I think that's incredible, because the number of listeria cases in neonatal population is maybe two figures per year, like 10s or 20s.

    Katy: Yes, so we know that both junior doctors, and indeed the public, are all very aware of listeria infection, but hardly anybody is aware of herpes simplex infections in neonates and what they can do to reduce their risk of babies getting infected.

    Emma: I think that really goes back to that idea that there's such a stigma about herpes simplex virus.

    Katy: Yeah, I think there's still a huge stigma around it and it's such a shame because of course, it would turn neonatal herpes into a much more easily treatable disease. Doctors should ask women in pregnancy, and those who are presenting in the emergency department if they have a history of this illness, because we can treat it if we know early enough.

    Emma: And it is that horrible combination of being completely stigmatised to talk about genital herpes, and then also disregarding cold sores as anything serious so most people don't bother to treat cold sores, and don’t think that cold sores are in anyway serious.

    Katy: Yes, and I think Hermione talked very nicely about what we can do to prevent these infections. And of course, prevention is better than cure, and she talked about the antenatal things we can do. But of course, between 10-25% of these infections are acquired postnatally, and we really need to educate parents and staff in hospitals about the importance of postnatal transmission of herpes from a cold sore lesion or a herpetic whitlow, and providing advice about how not to work with newborns or touch newborns if you have these lesions.

    Emma: But what does a herpetic whitlow actually look like?

    Katy: Well, it looks almost like blisters, often on the side of your finger, but it can also present like a paronychia, so redness around the nail bed, and it's often confused for a bacterial infection.

    Emma: Let’s imagine we live in the world where you could have anything you want. What are the tests that you really dream about if you're concerned about HSV?

    Katy: Well, in my dream world, we'd have a point of care test, like we have for COVID these days, to look whether a baby has herpes infection, when they initially present, so we can treat with antivirals at that point.

    Emma: But we don’t, so what is our second-best real-world scenario?

    Katy: So then we want to think of the diagnosis and take samples from as many sites as possible. Many people think of taking a CSF (cerebrospinal fluid) and sending this for HSV PCR, along with enterovirus and some of the other viral infections. However, we really, really want to catch these babies when they're at the by viraemic stage before the virus is disseminated. And therefore we have to take a blood sample, which is an EDTA (ethylenediaminetetraacetic acid), looking for herpes simplex PCR. So this is not the antibody test, the serum clotted test, which shows your response to herpes, we really want people to send off the viral DNA sample on admission.

    Emma: What can you tell me about the kind of swabs we'd like?

    Katy: Well, we want the viral swab, which in our hospital is a green swab not a charcoal swab, and it's the same swab of course everybody knows about with COVID these days. And what I would suggest is, any baby with any skin lesions, you may think it's erythema toxicum, you may think it's a staph infection, but please, please send that viral swab as well and you may get a surprise. This means you could start treatment earlier than if you forget that.

    Emma: If we were to hit the jackpot and have every investigation that we wished for, that actually exists at the moment, we would like a CFS PCR, we'd like a blood PCR that's in an EDTA tube, and we'd like viral swabs of absolutely everything. So any blisters, any lesions, any redness, and anything that looks like a paronychia, and that swab would be a viral swab, which would be a green swab, not a charcoal bacterial swab.

    Christo: Katy, Is there any value in popping blisters to get some of the fluid inside the vesicles?

    Katy: Yes, I think we would like to pop the blister and really try and get that green swab into the base of the blister even if it causes a little bit of discomfort for the baby. Your result is only as good as the swab you take.

    Well, it's a bugbear of mine that I've been training our juniors about for research studies, on the meningococcal disease, to doing COVID swabs. You don't get your swab to the back of the throat, or in this case to the base of the lesion, a negative result does not necessarily mean anything.

    Emma: Katy, going back to our investigations. Remember, this is a baby who doesn't necessarily have a fever, who may look just a bit sleepy. We've talked about what investigations we'd like to try and isolate the virus, but what other tests would you like to do?

    Katy: The tests that are very helpful would be the CRP (C-reactive protein) and that's usually low in herpes simplex virus, liver function tests because once your ALTs (alanine aminotransferase) start to rise, your risk of mortality increases significantly, and clotting because again, this can go off in these babies.

    Emma: Okay, so we have a list of all the investigations would like. Do we need to talk about treatment?

    Katy: I'd love to talk about treatment. I think it's very difficult, and a contentious area at the moment, because infectious disease doctors would like to treat all babies with acyclovir. It's relatively well tolerated; however, it does cause problems with the cannula and the veins, and the cannula tissuing.

    Emma: So, although we like vitamin A and acyclovir, we'd like to give it to everybody, it’s a bit like thinking about antimicrobial stewardship, and we need to think who needs to have it. Or we could start it on more children and then stop it if we've done the right investigation. I agree with you, it's always difficult to give, we always struggle with cannulas, and I don't think I have a good answer for that.

    Katy: I think any baby in which mum has any history of herpes illness at all we would treat. Any baby who is unwell with nonspecific signs of infection, or sepsis, it would be good to treat. And certainly, any baby who has abnormal liver function tests, or deranged coagulopathy, or who is not getting better after 24 to 48 hours of IV antibiotics.

    Emma: And I think you were particularly interested in babies who are under 16 days old, in the first few weeks of life?

    Katy: Yes, so we're conducting a national study at the moment and it does seem that the median age presentation with disseminated disease is about six days; with skin, eye and mouth it's eight days; and with encephalitis it’s ten days.

    Christo: We worry a lot about antimicrobial resistance, do we need to be concerned about acyclovir resistance in HSV?

    Katy: We're lucky at the moment that we don't seem to see acyclovir resistance very often in women who are treated or children who are treated with acyclovir.

    Emma: We're still standing! I'm going to give you five minutes to tell us about the BPSU study that you have just recently finished, o that is the British Paediatric Surveillance Unit, which we were just talking about a bit earlier.

    Katy: Yes, so this is a study we've been running over the last couple of years, where we look at all anonymous cases of neonatal herpes in the first few months of life in the UK and Ireland. We have interim results to date, the study is not fully concluded yet, but we have found most importantly, that the incidence of neonatal herpes infection has doubled again since the last study that Sarah mentioned that was undertaken about 20 years ago.

    Emma: So that means I have to talk to you again, another excuse to come and meet up!

    And finally, thank you so much for being with us, Katy, and for the enormous amount of work you've done in this area. And I think it's such an important area because of the lack of recognition and awareness of the horrible disease and the possibility that it could be avoided through a few questions and maternal prophylaxis.

    So, do you have three top tips that you'd like to share with our listeners?

    Katy: Three top tips are really that antenatal transmission can be reduced, as discussed by Hermione. Postnatal transmission will be reduced by good hygiene and not touching babies if you have a cold sore or a herpetic whitlow. And lastly, we can reduce mortality if a baby does get infected, by treating them early with acyclovir, the key to this is really thinking of HSV as a possible diagnosis.

    As you know, Emma I've been badgering you for years to talk about treatable causes viral sepsis, as well as bacterial sepsis. And I think everybody thinks for things like enterovirus, and RSV (respiratory syncytial virus), and viruses that you can't really give specific treatments to, you just have supportive care. But herpes simplex is one of those viruses that you can completely alter the course of the disease if you treat these babies early and mustn’t be forgotten.

    Emma: Thank you, Katie. It's the day of the virus, your time has come! I really appreciate it and it's been great fun to talk to you all and we probably should make a date to come and chat again once you've got all the results from the BPSU study.

    Katy: Thank you. Thank you very much for having me on your podcast.

    Emma: Thank you very much Katie that’s amazing and as always we add all our links on our show notes. For guidelines under management please look for the paediatric and microbial stewardship group. This can be found at: https://uk/pas.co.uk At the time of our recording the guidelines for the treatment of HSV were being updated. The general consensus among the UK paediatric antimicrobial stewardship network is based on Dr Fidler’s current BPSU data. The UK PAS guidelines for neonatal herpes simplex have now been updated. It is recommended for acyclovir to be used in the treatment of neonates with suspected sepsis and any of the following features:

    ALT or AST greater than 2 times the upper limit of normal or abnormal liver function tests

    Coagulopathy

    Vesicles

    Seizures

    CSF Pleocytosis

    Suspected Meningitis of Encephalitis

    Recent maternal HSV disease

    Post-Natal contact with HSV

    The recommendations also strongly recommend considering acyclovir in neonates who present on days 3-14 with one of the following, in the absence of the above risk factors:

    No obvious cause

    Not improving

    Or unexplained maternal, febrile illness peripartum to 14 days postpartum, especially if premature. Thanks you very much I hope you enjoyed the episode

    [music]

    This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

    [music ends]

    Emma: The views, thoughts and opinions expressed in this podcast relates only to the speaker and not necessarily to their employer, organisation, the Royal College of Paediatrics and Child Health, or any other group or individual.

  4. Episode 4: What's hot on fever? (released 23 January 2024)

    It’s January and all the children are back in school. And that means it’s a chance to swap viruses and herald in the new year with fevers!

    This month’s episode has the answers to your questions as child health professionals on this burning problem. Should you worry about the height of the fever? Should you give antipyretics? How do you reassure parents and carers that fevers are part of everyday life?

    All of these issues are discussed, along with a passionate plea to make hand washing great again. So don’t get hot under the collar, listen to The Paeds Round as we take time out to chat to special guest, Dr Alasdair Munro, senior clinical research fellow in paediatric infectious diseases at the University of Southampton (https://alasdairmunro.substack.com/about and https://twitter.com/apsmunro).

    With your hosts, Dr Emma Lim and Dr Christo Tsilifis.

    [music, with snippets]

    Alasdair: Fever is a normal physiological response to an infection, and then if you're able to explain that to parents, you will change their whole perception.

    Emma: Fever makes parents scared, they fear fever.

    Alasdair: Make hand washing great again, that's my new motto!
    [music ends]

    Emma: Hello, and welcome to The Paeds Round. This is a regular podcast and the Royal College of Paediatrics and Child. Health, and focuses in on key issues impacting child health. I'm Emma Lim, a consultant paediatrician and as ever, I'm here with my colleague Christo Tsilifis, and we're coming to you from the Great North Children's Hospital in Newcastle upon Tyne, and every month we invite experts to bring you important educational learning points. So, let's get into today's Paeds Round!
    I'm very excited today to have a guest from down south, Alasdair Munro! So hello Alasdair.

    Alasdair: Hello, thank you so much for having me on, what a pleasure it is.

    Emma: I've always been a big fan of yours for two reasons. Number one, we have a rule in our house that you can argue any point you like, as long as you have the evidence to back it up. So that's one of my big fan points. And number two, I always think if people have good ideas, but they don't tell anybody about them, there is no point having that idea. And I think it's so underrated the way we use social media and the way we put out important messages. And I think as paediatricians, we're really bad at this.

    Alasdair: Well, thank you so much, that's a very kind thing to say. And I agree, I think the problem is that paediatricians often very humble and feel that they couldn't possibly have anything useful to add. If I know this, surely everyone knows this. But, as it turns out, there's lots of good stuff to learn, it's great to share it. As soon as you start sharing it, you realise that lots of people want to hear a lot of it and it's not all quite as obvious as sometimes we tell ourselves. So yeah, good to get the knowledge out there, I guess.

    Emma: We did miss a really important point, because you didn't actually tell us what you do and where you come from.

    Alasdair: Oh yes, let me tell you. I'm a paediatric registrar down in the South of England. I'm currently out of programme, working as a senior clinical research fellow in paediatric infectious diseases. I'm working in the NIHR (National Institute for Health and Care Research) clinical research facility in Southampton, and I've been doing my PhD. It was a very interesting time to be doing a PhD, because I wasn't very far in when COVID derailed the whole thing, but it's been it's been somewhat to my advantage as well. I've had some wonderful opportunities, working in vaccine science in the pandemic has been quite something else. My interest is obviously infections in children, and I do my clinical shifts in the emergency department, so most of my clinical work is primary care. So I’m seeing a lot of the bread and butter paediatric stuff, and I have a real passion for making sure that we can get that stuff as good as we can do.

    Emma: And as always, I have Christo with me.

    Christo: Yes, thank you very much Emma. I am Christo, I'm a clinical research fellow in Newcastle, in the final year of my PhD. I work closely with Emma in general paediatrics and infectious diseases, so it's really great to be able to have Alasdair with us. And I think you mentioned before that there are various ways in which you've tried to communicate various gems about general paediatrics infection. Where are some of the places that we can read more about some of the articles you've put out?

    Alasdair: Oh thanks for asking Christo, allow me a minute to plug my material, thanks! So I use Twitter, the social media platform quite a lot, and you can find me through the tag @apsmunro and I tweet and share a lot of my stuff on there. I also have a newsletter on Substack. I can't remember the URL for that, but if you go to my Twitter the link is in the bio. And some of my old stuff is also on Don't Forget the Bubbles, which I'm sure most paediatricians will be aware of. But if you're otherwise involved in child health, and you're not aware, just Google ‘don't forget the bubbles’. It's an absolute treasure trove of clinical paediatric resources. And yes, some of my earlier blogs on there are still online. So that's where you can, go check it out. Some of them might be good!

    Emma: Honestly, I think he must have paid you earlier!

    Christo: We’ll have links to all of this in the show notes.

    Emma: So let's get down to business. This is a really interesting topic because we all think we know quite a lot about fever, but we often don't answer the questions that parents really want to know. So I'm going to start at the beginning and this is a question that Christo put to me. What is fever? What is the definition of fever and what is normal?

    Alasdair: Glad we can start with a very uncontroversial topic. Well, thanks for easing us in there!
    What is a fever? Well, it's completely arbitrary in some senses, I guess we use it to indicate a raised body temperature outside of the normal limit, usually in response to an infection, but not always. And when does raise temperature become a fever? Now in the UK, I guess we would say usually above 38 degrees centigrade, some people would go even higher and say 38.5, the really hardcore people would cut it off there. But it's because we don't really know precisely what the normal range of temperature is and it's all based on sort of historical data that’s not quite as certain as it should be. In fact, it's amazing how many normal ranges if you go back far enough looking for the beginning end up this way! But we would normally say a normal temperature is somewhere between 36.5 degrees and
    37.5 degrees. And then there's this beautiful grey area where everyone disagrees on what the temperature between the 37.5 and 37.9 means. And then I think most people would agree that from 38 onwards, that is a fever or a raised temperature.

    Emma: One of the things that interests me, and I think people don't think about this enough, is that you can be really sick with a bad infection and no fever. And you can also have a very high fever and not really be that unwell.

    Alasdair: Yeah, I think there's a lot of stuff about fevers that intuitively we feel should be true. And then when you look at the data, actually, it's not true. So, things like if the fever is really high, as you said, this must be a sign that the child is more ill. And actually, the predictive value of the higher the temperature is so poor as to be almost useless.

    Emma: So Alasdair, that's such an important point. We always get parents coming in saying, ‘my child had a fever, they must be really ill.’ And you're telling me there is no good evidence linking high temperatures to an increased risk of a serious bacterial infection or any other serious infection?

    Alasdair: That's right. We talk about these things having a predictive value, so how likely is a really high temperature to predict a serious infection, and outside of children who are really high risk of having a serious illness like those with immunodeficiency, in otherwise healthy children the higher the temperature is basically of no value. So once they've crossed the threshold for a fever, it's a fever, how high it was is not really that important. As much as it feels like it should be to parents and often to doctors as well.

    Christo: So knowing that the height or the grade of a fever doesn't necessarily predict the likelihood of serious illness. Are there any physiological changes that go along with this that we might see in clinical practice?

    Alasdair: Yes, there are. So, we know that the height of a temperature is correlated to the change in heart rate, in particular. We always used to think it was respiratory rate too, some degree that's probably true, but actually the most up to date evidence would suggest respiratory rate is much less affected by the height of the fever, but heart rate certainly. Now of course, this is the cause of a huge amount of anxiety and time spent, particularly in the emergency department. Because one of the things we always say we like to see is that temperature when it does normalise or comes down, that the heart rate starts following it down too. So of course we're all on the lookout for abnormal heart rates and things because they're all over our sepsis tools, as another trigger warning tool. But because we know it can be normal, it makes it really difficult in clinical practice for paediatricians to try and make sure people feel reassured and the documentation obviously looks complete and that you've done all the right things to check it all out.

    Christo: I think this is a really interesting paradox that we know that fever changes your physiological observations. We are happy with the idea that response to fever to antipyretic doesn't necessarily predict how serious the illnesses is. Yet, we do feel uncomfortable seeing a child with a heart rate of 160, who is febrile who otherwise looks well, and discharging them from the emergency department without a longer period of observation or seeing those observation normalise. I think it's one of those kinds of big problems, and Emma has previously talked about trying to identify sepsis being like looking for needles in a haystack. And I think this kind of epitomises that.

    Alasdair: Yeah, it does. And I guess the problem is, is that a lot of it does come back to where there's been bad outcomes for children, very often there'll be this retrospective look back and it's combing through all the details to see anything that could have picked up that the child was ill. And because the abnormal heart rate is so common, it very commonly gets picked up in these retrospective reviews and then gets implemented as a learning point. And people really feel like they can’t discharge children with abnormal heart rate, in case this is the one in a million children who does end up coming back very seriously unwell, which could not be detected at that first point. But this is one of the concerns that weighs very heavily on health care providers, particularly in paediatrics.

    Emma: I am burning, burning issues with all these normal values. I'm getting I'm going to get it all out now!
    First of all, one of my issues is that a lot of paediatric normal values were based on very small populations, so the original data. And we have a lot of new data with electronic observations, but it hasn't yet been incorporated into practice. So that's number one.
    Number two, I think you're completely right about people looking at all the children who got very sick and then looking back and saying that's the problem. Actually, we should be looking at all the children who well, So there was a really good study by Winter, who looked at 33,000 children that were discharged with abnormal and normal paediatric early warning scores. Very few, it was like less than 1%, had any abnormal outcomes. So, the majority of children are safe to send home. That is the message that people need to know. If you have a fever, you get checked over and the parents are happy and reassured, you're more or less safe to send them home.

    Alasdair: I agree, and I think it's one of the things that we struggle with isn't it. We all know that that's true, and in practice, it's so frustrating feeling like you can't do that, because were someone to look back they won't see all the other children who went home. They don't see how the heart rate is in normal in every child you see and the difficulty is that that makes sense to manage a busy department.

    Christo: Yes, so I think you mentioned earlier that there are some special patient groups outside of the general paediatric population, where actually the presence of fever or even the grade of fever, might put you in different risk categories. Would you like to talk us through some of those?

    Alasdair: I think that it's really important because I think actually, when you're managing a children's assessment unit or an emergency department, we spend a whole lot of time looking at different physiological parameters to try and risk assess children. But actually, we know that there are risk categories, the risk associated with them absolutely obliviates any of these other factors, by orders of magnitude, you should be more concerned about children who fall into these categories than any of the children with abnormal heart rates or respiratory rates, because they are at so much more increased risk. So it all essentially comes down to some issue with immunity, either an immature immune system, or a breach in the normal immune system, or actual innate or acquired immune deficiencies. So things like neonates, we know they have very immature immune systems. They are the most dangerous time of your whole life through an invasive infections, within the first few days or weeks. And so we all know you never trust a neonate, that's probably one of the most important groups.
    Then there's children who may have breaches to normal immune system, so a central line in situ, for whatever reason, is a breach of the normal protection to your bloodstream from bacteria because there's now a line in from the outside world and so we always have to be cautious with them. And then there are children who have their immune system, their immune cells are not functioning as they should be, either because they were born with a problem with their immune system or they've acquired a disease that suppresses their immune system, particularly some of the oncology patients, or they're on treatments which suppress their immune system. So, the children who have inflammatory diseases, where there are medicines that suppress that it also suppresses the normal function of your immune system. Children who are a long time on long term steroids, these kinds of things. And these are the children that even if they have normal physiological parameters, we should be thinking much, much more carefully.

    Emma: Thank you, Alastair, I think it's really important. That brings me down to one of my favourite things to say, it's all in the history. Most of what you'll find is in the history, and your examination is actually only going to back up that history. A good history is what you need. So are you in a high risk population? Are you immune suppressed? Do you have a line? Are you on medication that suppresses you? Have you've got chemotherapy? Have you got an autoimmune problem? Are you a rheumatology patient? I think we so often think about steroids, we often miss children like those with inflammatory bowel disease and don't recognise them as functionally immunosuppressed.

    Christo: And I think this brings up another challenge assessing children with autoimmune or inflammatory disease who present with fever, and that's determining what is due to infection because of their impaired immunity, versus what is due to their underlying disease. And whether this is a breakthrough of their arthritis, or if they're about to have a flare of their colitis, for example, I think that's really challenging.

    Emma: Which is a really important point because I think we get really focused on infection, but there are multiple causes of fever. What are the other common causes of fever that get overlooked?

    Alasdair: What I would say is I don't think there are any other common causes of fever. There are there are other causes of fever there, but they're all relatively uncommon and obviously because they're not related to infection they are less interesting, sorry, to all of the non-infection specialists out there, but that is the truth! They are most commonly probably inflammatory conditions, so auto inflammatory conditions. And I guess the one that paediatricians think most about would be Kawasaki disease, that we are hopefully thinking about in any child who have a fever or five days or more duration. But then there are other kind of rheumatological diseases that can present with fevers, and obviously one of the other ones with a persistent fever not to miss is malignancy. And this can very often be one of the presenting features of that. So I think those are the big three to think of. So, it’s infection, infection, infection, infection, and then also autoinflammatory and haematological malignancies. Those are the big three.

    Emma: While we're talking about the causes of fever, the other thing that I think people get really hung up on is how long the fever lasts. So apart from coming in and saying my child was better 40, lots of people come into me and say the fever still there after five days.

    Alasdair: I think there's probably two reasons for that. So one is the all of the bottles of paracetamol and ibuprofen liquid say on them don't give for more than three days. And so after three days of giving their children paracetamol and ibuprofen, parents think that they need to see a doctor no matter how well their child is, which is obviously not true.
    And then the other thing is, this magic five day cut off that paediatricians try and drill home. And that's purely because that's the point at which we want to make sure that the child has an infection and doesn't have something like Kawasaki disease, and we want to roll that out. And that's because we know that early treatment really improves the prognosis of that condition, so we want to catch it early.

    I think what's really worth bearing in mind however, is that there's not really a well characterised normal duration of fever for sort of benign childhood viral infections. You know, a lot of them will resolve in two to three days, but we see plenty of normal coughs and colds where the fever will go on for five, seven days, sometimes even longer. And we do end up investigating these children once it's gone on for quite a prolonged period of time, but often for children with a very clear source, who are well as long, as you're providing good safety netting advice, even a fever of a duration of five to seven days doesn't necessarily need anything special being done. Because we know that this is just normal or, you know, a non-insignificant portion of children with these illnesses.

    Emma: I couldn't agree more. I think things like RSV (respiratory syncytial virus) and influenza, they really drag on and people forget, and they think why this like a normal cold is so they tend to worry. The only time that I really worry is when a child's got better and then worse again, so the classic time is catching chickenpox, having a bit of a fever, fever goes away, child gets better, child then develops a second fever and I do worry about those secondary bacterial infections after a serious viral infection. So classically, chickenpox, occasionally flu, and we've seen it with COVID.

    Alasdair: Yeah, that's a really good point, and it's one of the things I've started saying more often, in the past few months, actually, to parents as part of my safety netting advice because we do see quite a lot of these reattendances when the clinical picture hasn't changed. And so what I'm trying to reassure parents more these days is, within a period of a few days, if child hasn't improved much, that's not necessarily a concern. We know that it does take a while for kids to get better from these, so staying the same is not so bad. Deterioration is when we become concerned, so if they're getting worse, that's a much better sign that you should be bringing your child back to be reviewed again. But staying the same for a while can be just normal.

    Emma: It’s the one question I always ask parents, I often ask parents, what is it about this illness that is different to previous illnesses that made you come? Or in what way has your child changed or differed?

    Christo: At this point is probably worth highlighting, and I think it's something that we could all do with communicating to parents and families that we see presenting with a child with a viral illness, that there is a normal number of viral illnesses that your average child under five might have in a year.
    And this might vary, but the number of normal episodes can be quite high. And I think there's often a mismatch between what we see as a normal number of illnesses in a given winter or in a given year, and what parents feel should be normal.

    Emma: I always tell parents that you can have 10 to 12 viral illnesses a year. Now say, you don't get one or two in the summer, that's absolutely one a month or more, so you'll be ill for two weeks, well for a week and then you're on to your second one. In real terms, if you've ever had a child that's snotty the whole entire winter with intermittent fevers, and that's normal and that's important. And that's part of maturing your immune system. So it's a good thing, not a bad thing.

    Alasdair: Yeah, and I guess that's one of the things that we often see these children who get brought in and they don't look very unwell and the parents will say, you know, he’s not that sick, but he's been ill so many times there's got to be something else ging on, this is like the fourth cough. And then this is the conversation that sometimes take a little bit longer, to just try and break down the fact that, particularly really young preschool aged children, this is unfortunately par for the course, particularly if they're in nursery or preschool, or they've got an older sibling in nursery or preschool or, in the early years of school. This is where all of these bugs come home and where they get encountered for the first time. And so your body is just learning how to recognise them and respond to them, and unfortunately, that means feeling a bit poorly, for pretty much a whole winter for a while.

    Emma: But actually there's a positive side to that, because if you meet these viral infections when you're young, so take the example of EBV Epstein-Barr virus, it will be a minor viral illness you’ll never notice. If you live in a nice, middle class, very clean house, don't socialise with other children and you only meet EBV you're a teenager you're in for a much more serious, prolonged illness. So I do say to parents, although they're ill, actually this is what you want. This is part of building up your immunity and meeting viral illnesses at a young age is important, and it's positive.

    Alasdair: I guess the sad truth of life is that there's a very large number of viruses for which infection is ubiquitous, there's no avoiding it. Almost everyone is going to encounter it, at some point. And for a lot of those, your body is really designed to encounter them for the first time in those early years.
    That's what we're adapted to, because that is the normal experience, that is when you're normally coming to terms with them for the first time so your immune system is geared up for that. And that does mean that a lot of them, you will experience a much more minor course in that very early period of life rather than later on. The really classic example is chicken pox that we all know, get it when you're really young, generally pretty mild and as a you know, a teenager or adult it's pretty, pretty horrendous. It's just the way we've adapted to be sadly!

    Emma: Well controversially, we could be like America and Australia and vaccinate for chickenpox, but I don't want to stir up more controversy in this podcast.

    Alasdair: We should definitely vaccinate for chickenpox, I'll just put it out there. We should just get on and do it.

    Emma: So, we've talked about what fever it is. We've talked about what's normal. We've talked about high fevers not being a problem. We've talked about the length of fevers and having lots of infections over a winter as also being normal. But what about pyrexia of unknown origin (PUO)? At what point can they call something a PUO?

    Alasdair: It's two weeks Emma, as I'm sure we all know, it’s two weeks obviously.
    What I guess important is to remember, I'm not very pedantic about a lot of things but PUO is one of the things I am a little bit pedantic about, because when we see children who have been febrile for a few days, who present and there's no clear source of the fever, they will often be labelled as a PUO. But it's not a PUO, that has quite a specific meaning in medical terminology, and it refers to a prolonged fever, longer than two weeks of duration that has no clear source. And it's important, because for normal children coming into primary care with a brief history of fever, with no clear source, it will almost always be infectious in origin, over 99% the time. For a PUO, and that prolonged duration of fever with no clear source, actually infection is still on the list, but you need to really be thinking about other conditions because it's very unusual for an infectious fever to last that long. And so that's when it does prompt, much more detailed investigation, and you really need to be confident of the source of that fever before you can move on and do anything else.

    Christo: And it's probably worth highlighting that true PUO Isn't that common. Certainly, in comparison to the number of children, like you described, that have a fever without an obvious source for three or four days. These aren't patients that you should be seeing every day, or even necessarily every week, depending on how big your catchment areas.

    Emma: I'm just saying that PUO is a child with a fever and no upper respiratory tract symptoms, o not a cough and a fever, not a snotty nose and a fever. It's just that the fever.
    I think this brings us along to a really interesting question because you said to us, if you have a prolonged fever you need some investigation. Now I read that is if you have a normal fever, you do not need much investigation. What do you have to say about that?

    Alasdair: I'd say I'd largely agree with that. I have my own sort of internal framework for managing fever, because it's by far and away the most common thing we see in paediatric acute paediatrics. It's really useful to have that kind of framework so you can very quickly move through your assessments and do it in a consistent way.
    So, obviously, the first question with any child with a fever is do they need resuscitation? Most of the time? It's no. So that's an easy point to move past. And then the next question is, is there a clear source? If there's a clear source then you very rarely need any investigation because you just manage the source as it needs managing and most of the time, that is no treatment. Then for a small proportion of the time that will may be bacterial infection like pneumonia or a urinary tract infection, and the overwhelming majority of those can be managed with oral antibiotics. And sometimes you may want to use IV antibiotics for children who are very severely ill.
    And then if there's no source, the next question is, are there any red flags? So, we will see actually quite a lot of children who have a brief history of fever with no clear source, and then you're going to be looking for things in the history or on your examination that are signals that this is more than a benign childhood viral infection. So that's things like the child appearing more unwell than they should, not responding, being lethargic or floppy, very poor urine output or fluid intake and these kinds of things. And if there's red flags, that's the time at which you need to do investigation, because now you're wondering, is there something more than a normal, benign childhood virus here that would need a treatment? And the question that's really on our mind is, could this be an invasive infection like a bacteraemia? That's the question you really want to answer with your investigations.

    Emma: The problem about the red flags is we know that if you look at the nice red flags, I think they did a nice study in Liverpool and they showed when they looked at 20 and 30,000 children that half have red flags, straight off. You're in a really difficult position because half that’s fine, you can send them home, you've still got half children with a fever, but we know that about 10% of the children are likely to have serious bacterial infections when they present to the emergency department and the red flags have only chopped that in half. Now we don’t want to investigate too many and I think the bit that everybody struggles in is who gets blood test, and which blood tests do you do on these children who probably have viral infections.

    Alasdair: Everyone does struggle with that, you're right. What I would say is that there's a difficult trade off here between expediency and invasiveness of your management, I think. So one of the famous paediatric sayings is ‘the observation is the best investigation’. And quite often these red flags, like abnormal physiological parameters or the child behaving unusually, it can just be due to having a fever at the time. And once you've given them a little while to have an antipyretic and to drink an hour or two later, they'll look completely different. And anyone who's worked in acute paediatrics will know, you can go from having a child who you're wondering if you should move them round to Resus, to jumping on the bed eating, a packet of crisps and singing, within the space of like an hour or two, just because the fever resolves. So I always think if you're not sure, if the child is stable, it is fine to just wait a little while because if you do blood tests and you weren't sure if you should do blood tests, you will quite often end up being unhappy that you did a blood test. Because your inflammatory
    markers may well be in a zone where they don't rule anything out and they don't make anything likely enough to really make you feel compelled to act. And that is a really difficult position, I'm sure we've all been in more than once.

    Emma: I couldn't agree more. And I think you need to remember the new sepsis international consensus guidelines say that you only need to do investigations and treat within an hour if you're shocked, and very few children we see are shocked, most of them are febrile. And in those febrile children you've got three hours, so that is long enough to give them paracetamol, ibuprofen, and a drink, and wait because watchful waiting, as my grandmother and you say, is the most invaluable thing, or masterly inactivity.

    Christo: I think you've mentioned there Alasdair about the amazing recovery some children can make with just some antipyretics. Are there any downsides to treating fever in an otherwise relatively well child has no risk factors and most probably has a viral upper respiratory tract infection?

    Emma: Okay, so Alasdair I'm a bit hardline about this, because I think that having a fever is a good thing. I mean, it's the body's way of trying to get rid of viruses. So, I tell parents they should only give their children paracetamol and ibuprofen if they look miserable, or they're clearly in pain. They do not need to keep giving paracetamol and ibuprofen just because they have a temperature, if they're running around and looking fine. What's your view on this?

    Alasdair: I'm sure it will come as no surprise to you Emma that I completely agree. I think you're completely right. And I guess the reason is to understand what why are we treating fevers? The reason is not because the fever is a danger to the child, so having a high temperature poses no risk for the childhood at all. It's a function of your body trying to help you clear the infection. So why do we treat it? Well, we treat it because actually, as one of the side effects of a fever, you feel dreadful, quite often you feel terrible. And actually, this is another adaptive mechanism of fevers, you're supposed to feel terrible so you go and lie down and you don't go and infect your tribe members or your members of your household or whatever. So it's supposed to make you antisocial. But we don't we don't like children feeling awful, and so we know that there's something quite effective we can do to try and help them feel better, so we can give them medicines like paracetamol, ibuprofen, which are quite effective at switching off that internal mechanism driving the high temperature and can make you feel more comfortable.

    Emma: Now, interestingly, we use paracetamol and ibuprofen a lot in this country. But my German friends think we're absolutely crazy because they never use ibuprofen in Germany and they think it's a very, very dangerous drug.
    So are there contraindications for using ibuprofen?

    Alasdair: If you have certain platelet problems or clotting abnormalities, you might be told to avoid ibuprofen or similarly, children who have a history of gastric ulceration or very severe gastroesophageal reflux disease might I'd avoid it.
    But the one that gets talked about probably the most is chickenpox as a reason to avoid ibuprofen, this is somewhat controversial I must say. The recommendation is based on some quite old observational evidence that found children with chickenpox who went on to develop necrotizing fasciitis, a flesh-eating bacterial disease, as an adverse effect of the chicken pox, they were more likely to have been given ibuprofen earlier in their illness than children with chickenpox who didn't get necrotizing fasciitis. Now, what’s not clear is whether children who got necrotizing fasciitis looked more sick, and so were more likely to have been given ibuprofen rather than being given ibuprofen made them more likely to get necrotizing fasciitis. So, it's what is the cause and effect of that association? It isn't clear. And so because there is an alternative to ibuprofen that isn't associated with this risk, the advice has just been to avoid ibuprofen because there's a safe alternative, so why do you need it?
    In practice, we, as healthcare providers will sometimes see children who have chickenpox whose symptoms are not well controlled with paracetamol. And I think it's perfectly acceptable to give children ibuprofen in that setting to try and relieve their symptoms because if there is an increased risk, the absolute risk is really, really small. Very, very, very, very small. And I think most people would agree, it’s easily outweighed by the symptomatic benefit of giving a briefing to children whose symptoms wouldn't otherwise be well controlled.

    Emma: Great, so paracetamol is absolutely everybody. Ibuprofen cautiously in anybody with clotting disorders, gastric problems, asthma occasionally, chicken box give it with caution.

    Christo: What causes fever in a physiological sense?

    Alasdair: So a fever is a normal physiological reaction to an infection. So, this is something that's conserved across all sorts of animal species. So even cold-blooded animals will go and lie in the sun to make themselves hotter than they would normally be, to try and drive their body temperature up when they sense an infection. So you see this across all hosts of animals. And it's triggered by chemicals that are called pyrogens, and these can either be endogenous, the chemicals you make yourself like cytokines, and things that you would make in response to your body noticing an invader, or sometimes elements of the infection themselves can be pyrogens, things like the lipopolysaccharides membrane on the outside of Gram-negative bacteria. And when your body recognises these chemicals, your hypothalamus sets a new higher target temperature. So, the part of your brain that controls normality says right, we need normal to be higher. And so, your body then sets about doing all the normal things that would do to try and make you warmer, so it makes your hair stand on end, it sends blood away from your fingers and toes and into your core, it makes you feel cold so you go and do things to warm yourself up, by putting on a blanket and going somewhere warm. And the reason it happens is actually not that obvious. It's not very well defined, precisely the effect that fever has that's beneficial, but it appears to slow down the growth of viruses and bacteria, so it helps stop them going so quickly. And it also seems to activate different parts of your immune system to help them respond.
    So, I always say to parents, fever is something your body is doing to the infection, not something an infection is doing to your body. So, it's the body's way of trying to help and the reason why that's useful to know, is it takes some of that fear away because people are often very scared that their child is going to come to harm as a result of the high temperature. And once you let people know that your body is in control, it's doing it to benefit you, it's something healthy that's happening, that can help take the edge away of some of that fear that the child is going to come to harm because their temperature is too high.

    Emma: I think that is the crux of this whole podcast. That fever makes parents scared, they fear fever. Fever is part of the normal adaptive response, and we should all embrace fevers and recognise that it is normal.

    Alasdair: Absolutely, sign of a well functioning immune system.

    Emma: And the flip side to that is that parents need to recognise deterioration in their child and know what a sick child looks like. And that's not just a fever, that's a whole host of things.

    Christo: To follow on from that, Emma. It's also worth pointing out to parents that sometimes absence of fever doesn't mean that there is no risk. So, thinking particularly about neonates and immunosuppressed patients who might be normothermic or even hypothermic in response to even significant invasive infection, or patients who are on immunosuppression, who might have the same inflammatory response. And it's sometimes easy to give the wrong message that not all fevers are bad, but absence of fever is a good thing. Whereas if your child looks unwell and you're worried and you think they're deteriorating, then not being febrile shouldn't be a reason to not seek advice.

    Alasdair: One of the things that I say to parents as part of my home fever spiel is that the fever itself is not really of interest to us as doctors so that a fever is just one of the many symptoms of an infection. So, when we know that you have a fever, we just know there is likely an infection somewhere. The fever then is not that interesting. What we want to know is what is the infection and is it an infection that can be treated or that poses a serious risk to the child. But although so much attention goes on fevers, and actually the relevance of a fever is not that much once it's told you there's an infection present, it is the infection that needs the attention.
    What I try to do is the best summation of you, what is normal sick, what is sick sick? I as parents try and remember the last time you had like a nasty flu like illness, and remember how you felt and how you behaved, and you just wanted to go to bed and sleep all day, you weren't interested in foods, you might drink a little bit, but if someone came to try and wake you up, it wouldn't be difficult to wake you up. And you know, you were still able to force a little bit of food and drink down if you knew you had to, and you didn't have any of difficulty breathing or those kinds of things. And that's I hope is a useful shortcut for parents to try and think well, if my child is sick, they're going to look like that, because they're sick so they'll look like sick. But what is sick enough, or you know what is out of the ordinary and needs additional medical attention? So trying to put that in a in a frame of reference from their own experiences I hope it's helpful.

    Emma: I think that's what we call the Mars bar or £20 note tests. So you say, Would you like a Mars bar? Would you go and pick up a Mars bar? Would you pick up that £20 note? If you're so sick that you wouldn't go pick up the £20 note, or if the child says, ‘no, I don't even want to Mars bar’ that's when I worry.

    Christo: Alasdair, do you think this frame of reference that we're talking about has changed at all over the past three years? And we ask this in January 2023, after three years almost living with COVID and it going from pandemic to endemic, and the recent fear about group A strep. Do you think our frame of reference and parents frame of reference about what normal is for infections has changed?

    Alasdair: I think that's a really good question. And I think I don't really get a good sense to be honest as to how it's changed at a population level. I think it's very different for individuals. So certainly, it's been a very traumatic few years for a lot of people and I think health anxiety will be a real problem for some families, certainly. And understandably so. I think, perhaps, for want of a better word, the normalisation of COVID and the discussion around the symptoms you could have with it, people are coming to terms with the fact that it is now a normal part of life and to expect that people will catch that infection and they will have these symptoms and then they will go away and that's okay. Maybe for some people this may help normalise viral or respiratory infections as a sort of a fact of life. So I think, it could sort of go one of two ways for different people as for how that's averaged out, and how many people may have been pushed one way or the other? I'm not sure.

    Emma: I think your point about health anxiety is really important. I think people are worried and anxious. And I think that's on the backgrounds of during lockdown, children didn't see other children. They didn't go to school, and they didn't get any infections, so for a year they appeared well, and then of course when they finally got back to school, they got all the infections they missed, and they seem to be a bit more unwell and that was a nasty shock to everybody.
    One of my take homes is that people forgot what viral infections look like. The other is, everybody washed their hands in COVID and infections went down. And I'm just saying hand washing is a very good thing, probably more important than all those antibiotics unnecessarily get!

    Alasdair: Washing is very, very underrated, very underrated. We're going to make hand washing great again. Make hand washing great again! That's my new motto. You'll see it on my hats I'll be wearing in the future.

    Emma: At the end, we always give everybody the chance to give us their three top tips. What are yours?

    Alasdair: Number one, a fever without a source doesn't need investigation if the child is otherwise well, and there's no red flag signs.
    Number two, fever is a normal physiological response to an infection. And that if you're able to explain that to parents, you will change their whole perception of febrile illnesses in their child going forwards. So, it's a really worthwhile investment on that first encounter.
    And I think my third one is that observation is really a wonderful investigation for febrile children because it is normal for children to look quite dreadful whilst they're febrile. And if you're concerned, sometimes just a little bit of time, allowing that fever to come down and the child can honestly look like a completely different child and save you the hassle of the investigations and all those other things.
    So, I think those are my top three.

    Emma: I’m just going to take you to task with number one. So the child that looks well has a fever, do they need a urine culture? Or not?

    Alasdair: Most of the time, they don't in my opinion. though, there will be some, any child under three months, I would always do it. Under six months with no clear source is probably wise. And then from that point onwards you can sort of risk stratify based on how long they've been febrile, and also if it's a boy or a girl. So, older boys sort of over the age of two with no history of urine infection, the likelihood of picking up a first UTI it gets progressively lower and lower and lower, especially without any urinary symptoms. So, think twice before, reflexively requesting that urine sample that is going to come back contaminated.

    Emma: Now we're in complete agreement. And in my books, anybody who's got a runny nose does not get a urine sample because it’s the runny nose causing the fever.

    Christo: There's also something about the way in which you collect your urine sample. The common approach of sticking a piece of cotton wool in a nappy to fester for four hours, and then our surprise when it grows, staph epi or some other skin commensals, that really needs to stop.

    Alasdair: I think I'm going to try really hard not to go off on a rant here. But please, please don't ever put a urine bag on a child. That's all I'll say about it. And I'll just draw a line under it there. Never put a urine bag on a child. That's the end.

    Emma: I wanted to say, clean catch only.

    Alasdair: Or catheter in a little baby. You could do a catheter, some people would still do SPAs (suprapubic aspiration). Wild people, I'm not sure why they're still doing that.

    Emma: So, SPAs, suprapubic aspirations, were a great thing when I was a junior doctor. I actually loved it because you could do your sepsis screen super quick because you do blood, Lp (lipoprotein) quickly, stab the bladder with a clean needle, an aspirate. Now obviously this was A) very invasive and B) a number of my friends got gastric contents, and you did wonder about the safety of this.
    Fortunately, those days have passed, SPAs are dead to us now, unless you have ultrasound guidance and a very good reason to do it.

    Christo: I think particularly in the face of things like the patented quick wee methods. I don’t know if you’re familiar with this. There was a great paper that was in archives a few years ago looking at basically if you get some cold water on some cotton wool and rub the tummy, it's likely to encourage urination in a very high proportion of infants, so great for those sceptic work ups.

    Alasdair: Just speaking from my own experience, I did do it a few times and the looks the parents gave me put me off doing it again! I’ve only done a couple of quick wees as the parents stared on at me in complete disbelief. Here's the weird doctor, just got to get the wet cotton wool, stroking their child's lower abdomen with it!

    Emma: I think it's been a great pleasure to talk to you Alasdair. It’s been really fun. I love your top tips. I think that you have really reassured us, and I think that listening to this, having these facts at your fingertips means that we can reassure parents that in the majority of cases fever is not something to fear.

    Alasdair: Thank you so much for having me.

    [music]

    This podcast is a collaboration between Medisense, medical education and the Royal College of Paediatrics and Child Health. You can find more creative learning resources on www.medisense.org.uk and of course a wealth of information on the important work of RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

    [music ends]

    Emma: The views, thoughts and opinions expressed in this podcast relates only to the speaker and not necessarily to their employer, organisation, the Royal College of Paediatrics and Child Health, or any other group or individual.

  5. Episode 5: Having a GAS – Group A Strep (released 05 March 2024)

    This month on The Paeds Round, Emma and Christo are joined by Dr Liz Whittaker, a paediatric infectious diseases consultant in London, an academic at Imperial College and convener of the British Paediatric Allergy, Immunity and Infection Group (BPAIIG) to discuss the bacteria, group A Streptococcus.

    They get into questions such as what is Group A Strep and what are its carriage rates? How do we pick apart those with just viral illnesses from those with strep throat? Whether or not to use antibiotics, rashes and much more. So please download and listen to the latest instalment of the podcast.

  6. Episode 6: Social media – what do paediatricians need to know? (released 23 April 2024)

    Featuring: Dr Jonny Guckian, Dr Emma Lim and Dr Christo Tsilifis

    This month on The Paeds Round, Emma and Christo are joined by our multi-talented podcast producer and dermatology registrar, Dr Jonny Guckian, who runs the medical education site, MediSense, and has held numerous social media-facing roles. In this episode we discuss everything social media, including public health information and how to use these apps in a professional capacity. How to protect yourself as a paediatrician? What are the benefits and pitfalls of social media? And where to look for guidance? And a whole lot more

    [music, with snippets]

    Jonny: We see a real absence of aggressive, well thought out strategies, dealing with
    social media or public health information.

    Christo: I think it's really important that you draw a boundary between what you use
    social media for in a professional sense and what you use it for in a personal sense.

    Emma: You wouldn’t do it when you’re speaking to people, so why do it on the internet?
    [music ends]

    Emma: Hello, welcome to The Paeds Round, the regular podcast of the Royal College of
    Paediatrics and Child Health. I’m Emma Lim, a consultant paediatrician at the Great North
    Children's Hospital and I'm your host as we educate you on real and pressing paediatric
    problems. In this podcast, we discuss and debate educational issues with experts and
    always round off with clinical pearls. So let's get going on our rounds!
    Social media, of all the things that you never know and wish you did know. It's my great
    pleasure to welcome Jonny Guckian, Jonny has been with you for a long time but you've
    never known about it because he always hides behind the mix desk and hasn't really
    come out. And I've thought, having done two podcasts where he never spoke, that we
    ought to give him the opportunity to come out of his hiding hole and talk to us for real so
    welcome, Jonny.

    Christo: And in fact, who better to speak about social media than Johnny, who has been
    involved in more social media facing roles than we can name.

    Emma: And welcome to Christo, my sidekick! And it's a really good thing that we invited
    him here today because actually I completely forgotten I was supposed to be doing this
    podcast! So half an hour ago. He texts me as I'm driving along in the car and goes ‘Am I
    seeing you later?’ And I'm like ‘Why? Are we going out? Were we supposed to be having a
    drink or something?’. And he was like ‘The podcast Emma! The podcast!’. So thank
    goodness that you are here to keep me on track Christo, really great to see you.
    Now today, we want to take you through something about how social media operates.
    And I think that this is a great topic, because I think it's something that we just don't think
    about often enough. And certainly we think about it in a very black and white way. When
    actually it's all grey. I have a dark side, and I tend as a paediatrician to be a little wary of
    social media, because I tend to think of it in quite a negative way. Probably because I'm
    too old, so I'm not used to using it so much. And probably because I'm always moaning at
    my children put their phones down. So, what's your point of view?

    Jonny: Thanks for having me, guys. I think all this talk of me following around the listeners
    so far of these different series, and you having a dark side mix, this all sound a little bit
    more creepy than it actually is! I promise we're not all that creepy!
    My take on social media, and I'm asked this a lot in various different bits and pieces I do
    on social media, is that some people think that social media is bad and has a dark side,
    and some people say that social media has a light side or it's all good. And it's very
    polarising, it's an extremely polarising medium. Think about it. You must have an extreme
    opinion to rise above the parapet. But actually, my take from the various bits of work that
    I've done on social media is that social media is a place for people to gather. It is a social
    entity, a social platform, or a collection of social platforms. Therefore, it is just like people, it
    isn't good or bad. It's a mix. But I think in this podcast will be quite useful to talk about
    some of the bad stuff, so you can avoid it. And then some of the good stuff. So hopefully,
    we can leave you all with a bit of a positive spin and some practical guidance on how you
    can make the most of these platforms.

    Emma: I think that's a really good point. I think there is no bad and no good. It's actually
    complex. Let's start at the beginning. The beginning is always health and safety for me.
    What do you need to know or what do paediatricians need to know to keep themselves
    safe? And to keep young people and children safe on the internet?

    Jonny: I think there's different ways that you can look at this. From one point of view, you
    can look at your professional responsibilities, i.e. the responsibilities of being a doctor or
    being a paediatrician on social media. Your second question is difficult, how to protect
    children. I think that is more of a societal and a systemic responsibility, which could be
    brought back to the platforms themselves. Because there's lots of implications for
    algorithms and child protection measures which can be put into place. But I think talking
    about the professional responsibilities and the ways you can protect yourself on social
    media as a doctor will be a helpful place to start.
    I'd say first of all, it's about following the duties of a doctor, but just applying that to social
    media. So I would link everyone who is vaguely interested in this to the GMC’s (General
    Medical Council) new ethics hub (https://www.gmc-uk.org/professional-standards/ethicalhub). Which has a whole section on social media.

    Emma: I am so interested in this. You know me, I am a member of a number of different
    groups on social media, but it never fails to astound me that people often put a lot of
    clinical information on, let’s say for example, ‘Oh, look at my child. They have a sore throat
    and their tongue looks like a strawberry tongue. What would you do?’. ‘I'm sitting in the
    emergency department and I have been told that this is a virus but I'm really worried’.
    And then there are like 300 responses from people who are not paediatricians, who've
    never seen that child and person, telling that person what to do!

    Christo: And is that not one of the risks? That we like to think that we work in a manner
    that is based on evidence, and part of that comes from our good standing within society
    as healthcare professionals - but social media removes the ability to quality control, not
    just what you read, but also what you say? How do we deal with that?

    Emma: Well Christo, it's like being accosted at the school gate, but on a monster level. In
    the same way that I never tell people I'm a doctor, because then they'll show me all their
    rashes! So, in the same way that if I'm at the school gate, I try and behave like a parent,
    not as a doctor, because if I tell people I'm a doctor, then they show me their rashes. But
    actually, it's not the right place to do a consultation, it's not safe and it's not proper. And I
    guess that's the way I think about it, what do you reckon Jonny?

    Jonny: So, it’s a good thing you mentioned rashes, because we haven't mentioned so far
    that I'm a dermatology registrar. And so therefore, there's not a lot of dermatology
    presence, at least on UK social media, or at least on Twitter, which is the platform I use
    most frequently. A little bit different on Instagram. And therefore, when I'm on there, I get
    asked a lot of clinical questions related to dermatology. Now, some of those are just
    asking me to drop my skincare recommendations, for which I have none, sorry. And what
    there's a lot of private messages I get, which are unsolicited pictures of rashes or people
    saying ‘What is this? What do you think about this? My Granny's friend’s dog’s cousin has
    this’. And I would say, twice a week at least, this happens. And, I mean, it's interesting and
    I try to point people in the right direction for where they should seek support. But
    essentially, you should not use social media to provide clinical advice. And even if you're
    going to vaguely approach giving general tips about concepts, you should give a
    disclaimer and say this is not clinical advice. But maybe if I if I was dealing with a general
    case of X, Y, Z, here is where I might find the guidelines for X,Y,Z. Be sensible.

    Emma: That's a pearl of wisdom. Although I really like the idea of you as the L'Oreal
    ambassador, with your skincare routine!

    Jonny: I think it would be Cerave to be honest rather than L'Oreal. Though I think they're
    owned by L’Oreal! They’re not paying me for this by the way, so I won’t plug them too
    much!

    Christo: It’s the dermatology cartel owning both the things that dry your skin out and the
    thing that makes it wet again!

    Emma: I’m going to tell you a secret, this is really funny. I'm slightly older now, but
    everybody says ‘Oh your skin looks great, you look so young age!’. And the secret is my
    entire family has had eczema for a billion years, because we’re really, really atopic and I
    cover myself with whatever emollient a child has twice the day! It doesn't really matter
    which is, over the years I’ve used things like Hydromol, Aqueous cream, everything. And it
    seems to work just as well as any expensive thing over the counter that's made up of
    mushed placenta and pearls.

    Christo: And we should probably state the disclaimer that this is not clinical advice!

    Emma: Are you trying to say that it didn’t work for you?

    Jonny: Shall we talk about social media again?

    Emma: That idea that you should not give advice, you should always use a disclaimer, and
    in general point people towards reputable sites. Three such simple, such obvious tips, I
    love, it is really obvious. You wouldn't do it when you were speaking to people. So why do
    it on the internet?
    So, we talked about professional responsibilities. What about safety in your responsibility
    to children and young people on the internet? What would you say in this situation?

    Jonny: I think it's really challenging. And I think there could potentially be a lot of benefits
    for some older children being on some kind of social media platform, which is well
    protected and supported. Because we live in an age where digital literacy is essential. And
    we know that learners, for example at school and university, use social media to access
    various forms of information and assimilate information. However, there are numerous
    potential risks, across a variety of different challenges from when it comes to exploitation
    and grooming, to the pure, simple risk of overuse of social media. Are we breeding
    butterfly minds? With a lack of attention span, as we often potentially hear as a risk. Or
    then there’s financial risks, etc.
    And I think, as I said before, a lot of that comes down to the responsibility of the platforms
    themselves. Because you hear a lot of horrible stories about YouTube, for example, as a
    prime example, YouTube is driven by algorithms. So, you stick on a video, and it
    recommends another video for you. And in adults there have long been claims and
    reported evidence regarding people becoming radicalised, through far right content on
    social media or on YouTube, going down the rabbit hole. There has been lots
    documented, by QAnon for example, with regard to that. There are parallels for children
    and there are countless videos out there for kids on YouTube. You know, people put
    YouTube on for their kids all the time, and not necessarily all that content is age
    appropriate or screened. And so there are numerous risks with regards to that across the
    various domains I mentioned.

    Emma: That’s brilliant. I mean, there were so many points in that and like you say there is
    so much to say. So just going back to financial risks, massive, I think that’s really
    underestimated. It happened to me. So, I looked on my email, and then it just says ‘You’ve
    been successful! You bid £260 for a blender’. And I was a bit surprised because I would
    never spend £260 on a blender, but it was around the time when my daughter was
    making a lot of smoothies and I went straight to her. There’s always one in the family! So I
    went straight to number three, and I said ‘Where the hell has that blender come from?’. ‘It
    wasn’t me! It wasn’t me!’ Of course, all the children are far more internet savvy than I am,
    she’d gone on, she made a bid on a certain site and she’d been successful. So, she bought
    herself a very expensive blender, and luckily I was able to email the person to say she’s
    underage and I did not give her permission and they were kind enough to sell it to the
    next bidder. But I think people really underestimate what their children are able to do.

    Christo: I think going back to your point, Jonny about the algorithms that dictate what
    content appears on our screens. Do you think some of this is to do with how interactive
    you are back to the content that you’re viewing? So, if you were to leave a child
    unattended for the number of hours, then you have no idea as to what videos might
    come up on YouTube or on other platforms such as TikTok.

    Jonny: We all leave a digital footprint, and algorithms do lead us down rabbit holes. That
    can happen from the most innocent parties, from a clinical example, not patients I’ve
    seen directly, but have read about in the literature. Within dermatology, there is a
    condition called dermatitis artefacta, which is a psychodermatology condition where
    patients will usually cause trauma to themselves, leaving scarring and this is often in
    visible sites and has been linked to problems with stress and mental health problems.
    Now there are various trends on TikTok, which essentially encourage a kind of pseudo
    dermatitis artefacta picture, where there are things like deodorant challenges for people
    spraying their faces, or their hands, or their arms. And kids are kids, they go out of control
    and sometimes patients who might be vulnerable to these kind of more dermatitis
    artefacta, pyschodermatology conditions, or psychological conditions may be more at risk
    of taking it too far. And that’s just one example of potentially many.

    Christo: Going back to your comments earlier about the roles of a doctor. Do you think
    that as clinicians we have a degree of responsibility to try and intervene when we’ve seen
    things like this?

    Emma: I think this is such a great question because it goes under the line of active
    intervention rather than passively accepting what you see. And you see so much on the
    internet. So what’s your take on this Jonny?

    Jonny: So, you can split this into your personal responsibility versus systemic
    institutional/the profession wide responsibility. I would parallel the personal responsibility
    with, let’s say, you’re walking down the street and you’re on a bus for example, and the
    person in front of you has a dodgy mole on their neck. Do you intervene? Now, some
    people would say yes, obviously, some people would say, absolutely not and they’d been
    mortified, it’s a bit like putting your hand up if they call for a doctor on a plane! Well, from
    a social media point of view. I think that if we are presented with misinformation directly
    to us, we should have a responsibility to point out that it is not correct or direct to the
    appropriate guidelines. I don’t need to go into that in more detail because we all dealt
    with this in COVID.

    Emma: I think that’s a great example. I think personal responsibility on the Internet can
    be quite challenging. In my experience, I’ve actually contacted, what’s the name of it?
    Who’s in charge of a website? What do you call them? The webmaster?

    Jonny: No, no. A domain owner.

    Emma: On occasion, I have contacted the domain owner or hosts, when I have seen cases
    of young people where I felt that their clinical details were being overshared without their
    consent. And I have asked them to take down and stop certain threads. And actually,
    every single time I’ve done it, they’ve always complied.

    Jonny: You do hear stories, and actually I read a patient who had a lung transplant and
    was able to identify her own lungs, or might have been another organ but think of I think
    I think it was lungs, identify her own lungs from a picture that was shared by a
    histopathologist because of a photo she’d been shown previously. So, she wrote to that
    institution and said, ‘Why are my lungs online?’ I don’t think she’d given consent for it. So,
    no matter what it is, it can go back to you so just be’careful. Yo’'d like I said you leave a
    digital footfall.

    Emma: Christo, would you stop the man with the mole?

    Christo: I think it depends on the setting, and my ability, sadly, to recognise a mole that is
    very dodgy is probably fairly poor compared to Jonny.

    Emma: Do you stop the man with the mole Jonny?

    Jonny: Oh yeah, definitely. Any opportunity to show off!

    Emma: So, Jonny, we can’t possibly have a podcast about social media without
    mentioning fake news. What can you tell us about fake news and social media?

    Jonny: We’re all at risk. There was a study in the last two years which said that fake news
    travels six times as fast on social media, compared to true news, and big information or
    news stories are 70% more likely to be retweeted. So, it is endemic at the moment, and we
    need to be vigilant. It crosses all specialties. But within paeds there is plenty out there.

    Emma: I think this is so true, and I think it’s partly our fault. And I think that we don’t use
    social media enough. Say for example, if you Google vaccination, 8 of your top 10 lists will
    be reasons why vaccinations are hideously bad for you and dangerous, and there’s only
    one or two there are actually really good. But actually, we know vaccinations are a good
    thing, but we don’t use it enough. We don’t put out enough information and parents
    can’t find good, trustworthy information because we don’t make it our business.

    Jonny: So this goes back to what Christo was asking earlier about whether we have a
    responsibility on social media. So, it’s not just about us stopping the person with the mole,
    it’s our institutions being braver, and being more agile on social media. At the moment,
    there is a risk of being too risk averse, so we see a real absence of aggressive, well thought
    out strategies, dealing with social media, for public health information. Our institutions, all
    the colleges, should be really across this and promoting careful, well informed
    information where patients are, so not just with clinicians, not just on Twitter where the
    clinicians are, but they should be going to Facebook groups. They should be going to
    Reddit, and they should be involving patients and patient stakeholders in doing so.

    Emma: I’m so glad you said that Jonny because I’ve just spent literally the last year of my
    life working on the northeast North Cumberland Healthier Together website, which was a
    fantastic website set up by Sanjay Patel initially in Wessex. And the whole idea behind it
    was that primary care, so GPs, physiotherapists, urgent care centres, secondary care, and
    parents and families, all wanted one place to find information. And also that the
    information was open and transparent, so that you could see what the doctors could see
    and the doctors could see the patient information.

    Jonny: And the benefit there is that with social media, you can reach populations which
    previously may have been more challenging to reach, whether that is across racial lines,
    or ethnic lines, or socioeconomic class, for example. And this is applicable with, yes, public
    health information, but also with recruitment to trials, and involvement in research. Social
    media is being used in that domain quite a bit as well. And that hopefully will help rectify
    historical disparities with those who are recruited to clinical research.

    Emma: Yeah, I totally agree. I mean, one of the things we really concentrated on is
    making sure that you could use it simply from your phone, because everybody has a
    phone. You need to think about making that one content count, so that you could say to
    them ‘Here’s the information about sore throats.’ ‘But here’s the information about what
    to do if you have a fever.’ ‘Here’s what group A strep really is.’ ‘Here’s what to worry about.’
    You don’t just need to worry about having a sore throat and a strawberry tongue, you
    need to think about sepsis, you need to think about pneumonia, you need to think about
    whether you actually need antibiotics or whether this is a virus which is going to get
    better by itself. And I think that’s where the idea of giving one piece of information, but
    allowing them to find out all the rest is so invaluable.

    Christo: And following on this thread, we’ve moved from perhaps the darker side of social
    media to some of the real positives that can bring to clinical practice. And I just wanted to
    get your idea, Jonny, about free open access medical education.

    Jonny: Yeah, I’m a big FOAMed fan. This was a movement, it can only really be described
    as a movement, which really came at the advent of social media about over a decade ago.
    Free open access medical education (FOAMed). It’s essentially sharing of any online
    medical education related content for CPD (Continuing Professional Development). It
    started off as a real electrifying movement of modernising the spread of informative
    content, and as social media has evolved over the last decade, has become perhaps less
    accurate all the time, perhaps less reliable all the time, but exponentially larger. And it
    really is taking off because it takes advantage of this connectivity of social media. The fact
    that you can have a medical student connecting with a world expert on the click of a few
    buttons is just incredible, and unheard of in society at large. So that is powerful. But then
    as we mentioned before, there are concerns about the spreading of misinformation
    alongside the good stuff. So, it’s just the case of applying the same critical appraisal skills
    that you might use in your clinical practice.

    Christo: I think it’s really important that we take what you say on board, Jonny, and use
    the same skills that we would use in assessing a manuscript or paper, or even a piece of
    clinical information in front of us when assessing a patient to this, because it seems that a
    lot of the issues with this information, the core information that’s out there is the lack of
    our ability to critically appraise it and remove the bad stuff.

    Emma: Absolutely. So think who wrote it? Do you know that they’re reputable? When did
    they write it? Is there a time scale? Has it been reviewed? And what is the background
    over the whole site? Is a site that you trust?
    Jonny: What is interesting about how the again, I don’t like talking about generations, but
    the majority of let’s say younger learners within the medical education world, they are
    doing this naturally, it is a new digital skill which they have adopted and mastered way
    ahead of those who have come before them. I did my Masters in medical education about
    a year and a half ago, and I looked at the quality of learning that happens in social media.
    One of the findings, I’m still reading this up so spoiler alert, but one of the findings was
    that learning often happens in networks, where you get a community of students or
    learners come together and they find this large piece of content, and they all nibble away
    like piranhas, and then they take it and they process it and then they compare it to other
    resources, they critically appraise it, they talk to each other about it. And they turn this
    large piece of content, which may have not been entirely useful into lots of useful bite
    sizes, which have been cross referenced. And I call that process cognitive hacking.

    Emma: Fascinating Jonny, I think this is so true. It’s really interesting, I look at my children
    who come back from school and they go ‘Oh, that was a rubbish day. This teacher was
    very boring’, or ‘Somebody talked in the class, I didn’t learn anything’. And they’ll go to
    their room and read by themselves, they will go and find the content that they missed,
    and they will make it up by themselves. And what I think is fascinating is that it’s a very
    active process, and therefore you learn it in a much more in-depth way than if you just
    skimmed it and if you were just given the information sitting in a lecture hall like we all
    did. Well, maybe not you Christo because you’re so much younger than me.

    Christo: As a caveat, I think I’m only about a year younger than Jonny.
    But I think the point about being active in learning is what differentiates being able to
    just kind of consume that information and to those people who kind of take the next step
    forward.

    Jonny: So it’s not even just a case of being active and passive, there’s more to it than that.
    If you want to look at the quality of learning, you should use a framework to be able to
    quantify it as such or judge it. And the framework that I tend to use was Bloom’s
    taxonomy of learning, which for those who are listeners who may have heard of, it starts
    off with knowledge then working through understanding and analysis, evaluation,
    synthesis, etc. And what is happening there when your kids are going are going online
    and looking up things, they are basically critiquing the information, the knowledge that
    has been provided, they have understood it, but they recognise the limitations, and they
    are going online to analyse it and evaluate it. And some people on social media, then go
    and synthesise new content and create new content.
    And that’s where it goes back to the very definition of social media, which we haven’t
    really discussed yet, because it’s complicated, but I would define social media as a
    platform, which gives you the ability to curate or create content or community. And it has
    to be multi directional, so a podcast is not social media. And it can be in the public
    domain or in private. So, by that definition, you’ve got Facebook, Instagram and Twitter as
    your publics, and then you’ve got Messenger, WhatsApp, for example as your privates.
    And there’s plenty of options which cross those boundaries.

    Emma: And I think that’s really interesting, because we’ve talked a lot about content,
    we’ve focused on content, but community is just as vital. And I think that people forget
    about this.
    So, I’m on Twitter like you, and one of the best things that’s happened to me on Twitter is
    that I’ve met people that I would never necessarily meet in my day to day life. So
    amazingly, I have an academic group with a pharmacist in Liverpool John Moores
    University, and I work in Population Health Science Institute in Newcastle University, and
    I’m a doctor, so we would never normally cross paths. We’ve actually published a paper
    together, and we’re on our second or third bit of work, and that came out purely because
    we had a common interest and we met in an online community.

    Christo: I think a really powerful example of another community that has done so much
    for medical education is the movement of the #tipsfornewdocs hashtag that comes
    round it seems with increasing frequency, but mainly at the end of July, start of August
    when newly minted F1 are about to start. And I think it’s really great seeing the whole
    spectrum of doctors who are maybe a year into qualification all the way through to
    consultants with decades of experience, joining together to provide useful advice for
    people who are quite nervous about starting and really forming a community that people
    can go back to with further questions. I think that’s a really, really great thing that
    happens.

    Emma: And since we’re promoting all these other sites, I forgot to say that me and my
    pharmacist are working on the Kidzmed project. If you haven’t listened to our podcasts
    about Kidzmed, which is how to teach children to swallow pills you are seriously behind
    the time. So you better hurry up and go there!

    Jonny: Emma, you made a great point about reaching people you’ve never met. And

    Christo, you made a similar point. This is because these are communities of practice. They
    just look different online compared to in the real-world space. And you’re able to reach
    out to new people, and that’s happening all the time, as medical students, for example,
    are finding professional role models and mentors and therefore, reforming their
    professional identity on social media, rather than just relying it on the workplace. Again,
    that can be really cool, because you can reach potentially more positive role models and
    you’re not restricted to who you’ve got as your consultant for example, which sometimes
    can be variable. So, it’s so expansive.

    Emma: Thank you very much, Jonny, Christo! It’s been a pleasure as always, and now you
    know what comes next, it’s our hot tips. Johnny seems to think all his tips are hot, but let’s
    see. I wrote down here we have ’23 hot tips, but I think we’ve only got time for three’. So

    Jonny, give us three!

    Jonny: Three practical things that you can do on social media. I’ll pick Twitter as an
    example. So, if you go to a conference, tweet at the conference, you will make entirely
    new professional networks. You’ll meet people you’ve never met previously who might be
    too shy to speak at the conference. So, when you go to a conference, find the hashtag
    tweet at it. That’s number one.
    Number two is find Tweetorials, or engage with Tweetorials, or even create Tweetorials.
    Tweetorials are longer pieces of information split up into individual 280-character tweets,
    with a few gifs thrown in. It's essentially the concept of chunking and checking, and
    putting complex information into short bursts. It's cool and interesting.
    And finally, have online live Twitter discussions. These can be case based discussions or
    debates about educational issues. There are a few examples which I would encourage you
    to look at, including hashtag MedEd forum which is run by one of my organisations the
    Association for the Study of Medical Education (ASME), or there are other clinical ones like
    Twitter finals, revision grip, twit, F R G. And these are live, in the moment, case based
    discussions. So, one of the examples that I like to give of proper success on social media
    learning is with one of our hashtag med forum discussions about reflection. And on there,
    we had a debate about the definition of reflection and that was between final year
    medical students and the GMC’s Director of Education and standards. And where else
    could you get that that disruption of hierarchy, and proper, what I call, pyramid ed?

    Emma: Christo, what are your hot tips?

    Christo: Much like Emma, I tend to use social media in more of a passive, taking
    information on rather than giving information out. So, I think it's really important that you
    find a network that shows you information that you want to see frequently. And the perils
    of the algorithm that Jonny discussed earlier also work in your favour this way, if you
    interact with certain content, you will see more of it. So, you will see great Tweetorials by
    people who do this frequently.
    Secondly, I think it's really important that you draw a boundary between what you use
    social media for in a professional sense and what you use it for in a personal sense. And
    that can sometimes become a bit blurred, particularly when you're interacting with
    people who you're working with, but also who often you are friendly with. But I think
    that's really important to try and avoid some of the risks that Jonny mentioned, in terms
    of crossing professional boundaries.
    And I think the third thing is that I think we probably need to capture some of the really
    useful information in a way that is a bit more permanent than just a Twitter like or
    retweet. And that might be your own curated list of bookmarks or favourites, or it might
    just be sending it on to another third-party service that allows you to store things, such as
    Evernote or Notion, but I think it's really important that you can aggregate all of this kind
    of really useful stuff in one place.

    Emma: Okay, thank you. I think that it is been amazing to talk about it. I think that the
    things you can do, and the things you can achieve is so much more if you actually get
    involved. For me, it has been a real journey. I never would have thought that, number one
    I'd make podcasts. I never thought that I would be able to offer virtual work experience,
    which I do with sixth formers to broaden access for people whose parents haven't been to
    university or aren't involved in the medical profession. And my advice to everybody is to
    have a go, try, don't forget to be critical, and have fun. Enjoy it. That's what it's there for.
    As always, I'd like to say a huge thank you to all my speakers. And to remind you that we'll
    be seeing you next month at The Paeds Round.

    [music]

    This podcast is a collaboration between Medisense, medical education and the Royal
    College of Paediatrics and Child Health. You can find more creative learning resources on
    www.medisense.org.uk and of course a wealth of information on the important work of

    RCPCH on www.rcpch.ac.uk or #ChoosePaediatrics.

    [music ends]

    Emma: The views, thoughts and opinions expressed in this podcast relates only to the
    speaker and not necessarily to their employer, organisation, the Royal College of
    Paediatrics and Child Health, or any other group or individual

   

Found an issue? Please get in touch with us:

Email us at rcpchlearning@rcpch.ac.uk