Lyme Disease in Children: Interview with Professor Gareth Tudor-Williams

Gareth Tudor Williams

Some months ago, Lyme disease UK was approached by the research team from the popular soap opera, Coronation Street, about a possible story line featuring a child who contracts Lyme disease.

In light of this story line, we invited Professor Gareth Tudor-Williams, Emeritus Professor Children’s Infectious Diseases, Imperial College London, to answer questions that a parent might have about Lyme disease, including how it is diagnosed, treated, and crucially, how to prevent it.

Download pdf version of this interview.  Watch full interview on YouTube or click on each question to watch video clip of Q&A.

Q. Professor Tudor Williams, would you like to introduce yourself?

Thank you very much. I am infectious diseases Professor at Imperial College in London, recently retired, but I was for 27 years practicing as an NHS Consultant in children’s infectious diseases at Saint Mary’s Hospital, in Paddington, which is part of Imperial College Healthcare NHS Trust, and in that time I saw a lot of children with tick borne infection.

Q: What is Lyme disease? 

GT-W: Lyme disease is a bacterial infection. It’s transmitted to humans by the bite of an infected tick. Children can get infected if they have a tick attached. The name of the bacteria is Borrelia, and there’s a big family of different Borrelia species around the world. In fact, depending on where you are when you contract Lyme disease, the signs and symptoms can be a bit different, because the species are a bit different around different parts of the world.

Sucking tick Macro photo on human skin. Ixodes ricinus. Bloated parasite bitten into pink irritated epidermis. Small red drops. Dangerous insect mite. Encephalitis, Lyme disease infection.

Q: How can my child get Lyme disease?

GT-W: Being in areas where ticks live can put your child at risk of Lyme disease. Typically, in grassy areas near woodland. Ticks live in heath land, parks and gardens, especially where there are wild animals around. So the kind of parks where deer and other wild animals roam. They live on small mammals and birds and humans get infected if the ticks attach themselves and transmit the bacteria. Walking through fairly long grass, puts people at risk of tick bites but pets can also pick up ticks. Dogs that go roaming in the countryside may come back with ticks, and these can fall off the dogs and infect humans, even within the home.

Q. Where in the UK, would you find ticks?

GT-W: Great question. So there’s been some lovely work done a number of years ago. The Big Tick Project, which involved vets sending ticks that have been collected from their patients to one of the reference laboratories. One dog sometimes brought in up to half a dozen ticks.

The Big Tick Project is brilliant. It shows you this incredible distribution of different ticks that can carry Borrelia. The sheep tick is probably the most common of the ticks in the UK and it can be found all over the place. You don’t have to go to the Scottish Highlands or to the New Forest in order to come across these ticks. There are several other species of ticks that can carry Lyme disease. Have a look at the map below. It’s really a strong illustration that these ticks are very widespread. They don’t respect county borders. They are everywhere.

Q. Do all ticks carry Lyme disease?

GT-W: That is a really good question and there’s very good evidence. The national surveillance for tick-borne infections is carried out at Porton Down, Rare and Imported Pathogens Laboratory and this is the laboratory responsible for NHS surveillance in the UK. The answer is that the vast majority of ticks do not carry human pathogens. Somewhere between 2-5% of ticks may carry Borrelia species, sometimes a bit higher. A recent survey in Richmond Park in London, which is known to be a place where people have contracted Lyme disease, showed that only 8% of the ticks were found to be carrying Lyme disease. So, if you find a tick attached, it’s far more likely than not that it will not be carrying Lyme disease, bacteria, the Borrelia bacteria.

Different sized ticks on finger

Q. What should I do if I find a tick on my child?

GT-W: The most important thing is to be looking, to be vigilant and to try and find attached ticks so they are not left unnoticed. Ticks vary in size and especially the nymphs are very tiny. If your child has been somewhere where they might be exposed, e.g. if they’ve been on a camping trip or out wandering in heath-land or grassland, it’s really important to have a careful look everywhere, including in the armpits.Childrens height diagram

Children obviously are different height to adults. So when they’re going through long grass, the ticks can attach anywhere on the head, on the neck, or on the shoulders. They will crawl across the skin as well, and find nice, warm, moist places like the armpits and the groin.

If you discover a tick, do not use petroleum jelly or matches or anything that could distress the tick. The aim is to detach the tick from the skin. Use really thin, pointed tweezers and get the tweezers as close to the skin as possible, lifting the tick out, ideally with the mouth parts intact.

tick remover tool

There are also tick tweezers or tick removing devices. You can twist these and lift the tick away from the skin without any of the body of the tick being squished. If you squish the body, you will squeeze the contents of the tick’s stomach beneath the child’s skin, from where bacteria could potentially get into the child’s bloodstream, causing Borrelia and other bacteria in the tick, to be transmitted to your child. So that’s clearly a bad idea.

Q. What symptoms should I look out for if my child gets bitten by a tick?

GT-W: The first thing is that the bacteria will take some time to become active and to replicate, so that you won’t see symptoms immediately. Any time after the first few days post-infection is usual, but potentially even up to 3 months. Typically symptoms come on between a week and 21-30 days following a bite. You will see things like the classic erythema migrans rash, which is a red ring that expands and is painless and not usually itchy.

It can be a single rash or it can be multiple rashes. It can be at the site of the tick bite, or it can be elsewhere. Of course, quite often you don’t even know that the child has had a tick attached. So an unusual red rash that is expanding day by day is a sign, and it may leave a little target like shape in the centre. The classic presentation is a target lesion. However, quite often the rash can be atypical and doesn’t look like that. It can look like a big red blob or blotch instead. A tell-sale sign is a rash which is getting bigger day by day.  It is also important to be aware that not everyone will develop a rash.

The other thing that I think is really typical from my experience is summer flu. So if your child develops flu-like illness in the middle of summer, which is obviously not typical of when flu is very prevalent, it can be a sign.

If your child gets headaches and experiences general malaise, maybe some fever and fatigue, and develops joint ache or muscle aches, then that could be a manifestation of Lyme disease.

Of course, there are many other reasons that children get those kind of symptoms. However, in the middle of summer it’s obviously a bit unusual to get flu, and I would be alert to that.

Then there are some specific things that Lyme disease can do due to its effect on the nervous system. One of the things that it can do is to cause weakness of one side of the face – a facial nerve palsy. In Europe, some species of Borrelia, can cause inflammation of the ear, so the whole of the pinna (the ear lobe) gets red and swollen without being particularly painful.

A very unusual manifestation of Lyme disease which is highlighted in the Coronation Street story line is more severe central nervous system involvement. I mean, that really is unusual, but sometimes children will present with a pattern of illness that looks a bit like meningitis, and that is clearly a more serious presentation of Lyme disease in the acute phase, especially if left untreated.

There are a number of issues that Lyme disease can cause long term. But I think the most important thing is recognising the early signs and symptoms, so that any child who is exposed and develops any of those kind of symptoms gets treated so they don’t go on to develop long term problems.

Q. When should I take my child to a doctor? If I think they might have Lyme disease?

GT-W: If you have any concerns that your child might have Lyme disease and they have been somewhere that they might potentially have been exposed within the last three months, then do not hesitate to make an appointment with the child’s GP.

I think it’s great if parents are even thinking about Lyme disease, because one of the things that we are very aware within the medical profession is that there’s not much awareness, even when children go off on camping trips and so on. I think that’s getting better and that Lyme disease in on more people’s radar.

Lyme Disease UK’s website gives schools some information if they’re sending children off on camping trips and other school excursions. Organisations like the Duke of Edinburgh Award are now very aware of these risks.

If you are a parent of a child who has been on a camping trip or who could have been exposed to ticks during another activity and they develop a rash, a nerve palsy, or summer flu or any other unusual symptoms that cannot be explained by something else, then please do take them to your family doctor.

Picture of sick child

Q. How will the doctor diagnose Lyme disease?

GT-W: If you are bitten by a tick and you are unlucky enough for Lyme disease to have been transmitted, the body produces an immune response, but it takes time. It takes weeks for this particular bacteria to initiate an immune response that is measurable. So, if you present within a week with a erythema migrans rash, then the blood test is still going to be negative for Lyme disease as an immune response won’t have been mounted yet.

The family doctor or the specialist who, I hope would be able to assess the risk, should take a careful history and decide which symptoms displayed by the child could be attributed to Lyme disease. Treatment should be started immediately. In fact, I wouldn’t even recommend sending blood at that stage. There’s really no point, because a negative test doesn’t help you. It doesn’t tell you that the child has not got Lyme disease.

It’s sensible to wait at least 4 – 6 weeks from the time of the tick attachment before doing tests. The crucial thing is to get on and treat it as soon as any signs or symptoms appear.

blood in test tube

GT-W:There is clear guidance which is now at least 10 years old from the National Institute for Clinical Excellence which includes a description of Lyme disease treatment for children of different ages that crucially involves high dose antibiotics.

Typically it depends on the age of the child. But Amoxicillin may well be the first antibiotic of choice for younger children, but it has to be given in a high dose (30 milligrams per kilo per dose), and for 21 days. So this is not like a sore throat requiring 5-7 days of treatment. This is more serious.

You do have to ensure that your GP, or whoever is prescribing for the child, is aware of the guidance, and that the child will need 21 days of treatment. Sometimes a first course of treatment isn’t enough. I’ve seen children who have developed symptoms downstream such as ongoing headaches, fatigue, listlessness and a loss of appetite. In these cases, it’s okay to treat with another antibiotic for a further period of time. And, generally speaking, this is very successful. High-dose antibiotics are the answer.

Q. Will my child get better after treatment for Lyme disease?

GT-W: My experience and also the experience of European pediatricians and others specialists who see a lot of Lyme disease cases, is that if families are well organised, the correct diagnosis is made early and appropriate treatment is administered for at least 21 days, then the outcome is excellent. I admit that it’s not always easy to achieve prompt diagnosis and treatment. The vast majority of children don’t end up with any long-term problems at all.

child and adult walking in woods

Q. What can I do to prevent my child being bitten?

GT-W: You want to try and prevent your child coming into contact with ticks, but that can be difficult, and we don’t want to wrap our children in cotton wool. We want them to go and enjoy the outdoors. Clearly insect repellents that repel ticks are very wise. If you’re going into places where you know there are ticks, wearing long sleeves and long trousers is advised. But frankly, in the heat of summer, I don’t think it’s terribly practical. Wearing light coloured clothing is a good idea so you can spot ticks more easily.

The most important thing is being aware of where ticks may be, and then being vigilant by having a very careful look at your child at the end of the day. Ticks can go unnoticed for days whilst they feed, only becoming more noticeable as they get more and more engorged. If there is a tick, detach it safely using one of the methods described, and hopefully, there will be very little risk of transmission.

coronation street still photo

Q. After watching this storyline unfold on Coronation Street, what do you think are the most important takeaway messages for parents concerned about Lyme disease?

GT-W: From what I understand, the child in Coronation Street ends up with a relatively late diagnosis and with quite significant complications and more serious manifestations of Lyme disease.

The message I’d like to get across is that the more aware the public and the medical professionals can be about ticks and the risk of infection, the better. With global warming, we are aware that the tick populations are expanding, and it’s becoming more likely that children will come into contact with ticks and tick-borne infections. Everybody being a bit more aware is a good thing.

I think that it’s fantastic that Coronation Street has tackled this subject. I wouldn’t want people to imagine that every child with Lyme disease is going to develop the kind of problems that Joseph does. In fact, if it’s picked up early and treated appropriately then children are going to recover and not end up with a difficult to treat disease. It’s very, very unusual that we’d end up needing to use hospital-based care and intravenous antibiotics for children with Lyme disease. This disease is treatable but it needs to be picked up early enough.

Thank you so much, Professor Tudor-Williams. We are so grateful to you for working with us to highlight that awareness of Lyme disease and ticks is so important.

Recently retired, Professor Tudor-Williams was for 27 years practicing as an NHS Consultant in children’s infectious diseases at Saint Mary’s Hospital, in Paddington, which is part of Imperial College Healthcare, NHS Trust. In that time he saw a lot of children with tick-borne infections.