"I became this mother that I never wanted to become, and I lost it with all of the doctors and nurses, and I said, “If you don't help me and my daughter, then I've got to discharge myself because what you're doing is nothing."

Our Experience of Sydenham’s Chorea – and what we did next

For our Online event 2024 Nikki joined us from Milton Keynes in the UK to talk about her daughter Gracie, who was diagnosed with Sydenhams’ chorea in June 2021.

[Nikki] Hello. I’m Nikki. I’m from Milton Keynes in England.

I have a daughter, Gracie. She was eventually diagnosed with Sydenham’s chorea back in June 2021.

But my goodness, did I have to fight for it!? What a struggle. Yeah. Even my brother-in-law, he’s a doctor, and he’s never seen Sydenham’s chorea before and didn’t even know what was going on with Gracie.

I admitted Gracie to Milton Keynes General Hospital on the 11th of June 2021, because I just witnessed something that I never want to go through again, she just literally overnight just started having some sort of tic. I thought she was getting some form of Tourette’s, her leg kept moving out and her arm just flicking out to begin with. As a mother, I thought maybe she is putting it on. She’s just being a bit of a class clown, but deep down I knew something else was happening.

So I took her to Milton Keynes.

They just looked at her and one consultant actually said to me, is your daughter play acting?

Then I was sent back home. They just said if her condition gets worse… literally I was back in less than 24 hours later because she was deteriorating before my eyes.

[Nadine] And it can be so terrifying, can’t it? For a parent? I know, we had a group of 24 children [in Scotland in the early 2000s] and there was “brain haemorrhages”, there was “tumours”, there was all sorts of really scary things being said as they were going through this process of trying to find the answer and trying to find the right consultant in the hospital who could recognise that it was Sydenham’s chorea, we were very, very fortunate. We had cardiologists, neurologists, paediatricians who all did recognise it.

[Nikki]  Yeah, I think that was the thing with Milton Keynes. They had no idea what was going on with Grace, and it took two weeks of literally going into hospital, being discharged, going back into hospital, to the point where Gracie lost her vision.

I knew I had to become a stronger mother and not just be fobbed off. I had to say, “keep us in here and observe Grace”.

And they did, but they were still unaware. They put Gracie on a course of antibiotics because Gracie started getting an ear infection. So they put her on that. And when they got into her system, she perked up. So then we were dismissed again and sent home.

As soon as the antibiotics got out of her system, that’s when she hit the worst – to the point where we was admitted straight back into MK General, put into the corner of a ward, given Calpol [paracetamol/acetominophen] and just left.

And it was only when Gracie after about two weeks of being in and out hospital, she had a massive seizure overnight and it was horrific, absolutely horrific, and I became this mother that I never wanted to become, and I lost it with all of the doctors, nurses, and I said “if you don’t help me and my daughter, then I’ve got to discharge myself because what you’re doing is nothing [I couldn’t’ do myself] – I said, “I might as well just feed her Calpol at home”.

I was going to self discharge and then a lovely nurse come over and spoke to me and said “we just don’t know what’s going on with Grace.”

And I said, “but I just need help. You’ve got to help us help my daughter. She’s nine. I don’t know what to do as a mum.”

And then we was admitted the following day to John Radcliffe hospital in Oxford, where she was seen by every consultant, neurologist, everybody. And that’s when she was finally diagnosed with Sydenham’s chorea. Yeah, so it was, oh, a blessing and a relief, to get that diagnosis. Then the symptoms make sense, but also by getting that diagnosis, it opens up the door to getting the physio or the OT [occupational therapist] and speech and language involved, who can address the physical symptoms that you’re seeing. That can be so, so scary.

And I think on the [Sydenham’s chorea] Facebook page, lots of people share videos and it’s really interesting to see. But some of them are really quite scary to see because it’s unusual movements, it’s a really, really scary time. But I think that nurse was really good and just being honest and I think as patients, as parents, that’s all we want – someone to be honest and say, look, I don’t have the answers, but I’ll help you find them.

[Nikki] And that’s all you want to hear. I’d rather somebody would have said to me (one of the consultants at Milton Keynes general)  to go, do you know what, Miss Saving, hands up, we have no idea what’s going on here, but nobody [did]. It was just like, do you know what? If we push you in the corner, sweep you under the carpet, it’ll go away. But it wasn’t going away. It was getting worse.

[Nadine] And we used the the Psychiatrary team to support the sick kids at the time. We very much got in around that behaviour. So where they would say [before knowing the diagnosis] to you, “is the child play acting or is it fake?” You know, it’s really important to understand the behaviours [caused by Sydenham’s chorea] because it’s really scary for the child as well. They don’t know what’s happening to their body. A lot of children will talk about feeling “possessed”, that somebody else has “got control of my body”. But, you know, that’s really scary. So it’s really important then that they have either psychology or a team of mental health professionals offering that support, to explore their feelings and emotions.

So what happened then?

[Nikki] After we was admitted to John Radcliffe’s, I mean, it just felt like a 10 tonne weight had been lifted off my shoulders. They did more and more tests on Gracie then she was obviously diagnosed with it [Sydenham’s chorea], and then they just said it’s going to be trial and error, Miss Saving, of what medications to put Gracie on. We can try this… And lo and behold, the first medication they put her on, she was just improving day by day.

[Nadine] And which medication was that? I’m sure everybody’s wondering.

[Nikki] She was she was put on an anti-epileptic medicine called Carbamazepine. Yeah, and it worked wonders for Grace. You could see the improvement. She could walk again. Her speech was coming back. Yeah. Learning to write again.

Oh, it was like a wonder drug. Absolutely. I’m not saying it works for everybody because it doesn’t. It’s just hit and miss. But for Grace, it worked perfectly and then she was put on penicillin, and she’s still on penicillin now, up until she’s 21.

[Nadine] And lots of the literature around Sydenham’s career will say they make a full recovery in this first six months. Did you find that with your daughter?

[Nikki] Absolutely, yeah. But I was always waiting for a relapse, because you hear obviously, joining this group, because once I knew what she had, obviously I researched it to find out what’s going to happen. What’s the next, you know, port of call sort of thing.

But yeah, she was amazing. But even now, when we’re nearly three years on, you hear stories, don’t you, from other people? And I’m just like, well, how is she going to have a relapse? Because you wouldn’t know Gracie ever had it. Now, there are ongoing things, but it’s hard, because I don’t know whether it’s from when she had Sydenham’s chorea, is this a knock on effect, or is it just part and parcel of Gracie growing up?

[Nadine] That’s fantastic. Of who she was [always] going to be.

And you question everything, don’t you? You start to question everything. Yeah. Once your child’s been unwell. You’re just a lot more hyper vigilant to any symptom. So she’s in secondary school now?

[Nikki] Yeah, she started in September. Year seven. And doing amazing. There’s a few ongoing things like her eyesight really deteriorated with Sydenham’s chorea.  It would be nice to hear from other parents or, you know, people that have gone through it. What other knock on effects they’ve had from it, not just the tics and the movements and things like that, but just, is there any other ongoing signs? Because Gracie’s eyesight now, she suffers, I mean, she’s only 12. Her eyesight deteriorated. She now has to wear glasses, but is that part and parcel [of the Sydenham’s chorea]? You know, my eyesight’s not the best, sort of thing, but also she gets migraine flashes. She’s never had them before.  I mean, a 12 year old doesn’t say what a migraine is. I don’t suffer with migraines. It’s not a word that we use in our household, but she’s just like “mum, it’s not a headache, I feel like I’ve got a migraine”, and I just think, is this something or is it just Grace? Or is it just a part of Grace now, sort of thing

[Nadine] And I know, our study [submitted, pending publication] picked up migraines, but again, we were a study on just 12 patients. So what you’re asking yourselves, is this just part of who she is? And actually technology’s got so good around testing our eyes compared to when you were younger. If they just naturally picked up on these concerns with their eyes, and they’re more treatable now, or is this an underlying thing with the Sydenham’s chorea? And that’s ultimately what we’re trying to do within our research world is get a clearer understanding of what’s the predictability around the relapses, but also how to diagnose? Because your experience there in Milton Keynes, you know, it took a long time to get that diagnosis – and you would hope in this day and age that wouldn’t be the story. And that was originally what Andrew Samuel had said to Doctor Morton [about setting up the charity] – what can we do, so that this is picked up quicker, that people get the right treatment, see the right professionals in a timely manner?

So we hope some of what Michael Eyre is going to share with you today will touch on some of that, but there’s lots of really good work going on behind the scenes with the charity exploring all of these questions. It’s just the only thing with research, it’s very, very slow. So we started this work in 2005 and I think we’ve made amazing headway, but it’s very, very slow.

So if you had some golden advice to any other parent, if they were sitting in the original hospital with Gracie, what would your advice be?

[Nikki] Like I’ve said, when I joined the Sydenham’s chorea Facebook page, “do you know what, don’t give up hope and also push, push, push, push”. Because if I hadn’t, who knows, I could still be sitting here with Gracie having the movements. I just had to become such a…. I am quite a strong person anyway…  but I’ve really had to dig deep and push for everything. For Gracie, it was hard. And it’s heartbreaking because you’re already going through the worst time of your life. And then I just had to keep my head clear, and just go, “do you know what, it’ll be alright…” But I had to fight. You have to fight because it’s so rare, and it’s just a shame that you have to go through that. But we got there in the end and that’s what I would say to anybody going through this. Please do not give up hope. And you know what? If you’re in and out hospital day in, day out, keep doing it. Keep pushing because you will get the diagnosis in the end. And that’s what happened with us.

[Nadine] And I think that’s really important and I think we as professionals, you know, we also go through a journey and we pick up skills along the way.  By chance in Glasgow there was an outbreak of Sydenham’s chorea around that time, and I became very aware of it. But if I’d trained in Newcastle, I may not have had that experience. So it is always about pushing and asking those questions, because there will be people within the professional fields who will have had experience.

But you’re exactly right in what you’re saying, it’s the rareness of it, that ultimately makes it really challenging sometimes. I read a lot on the Facebook page where people get really frustrated with professionals because they don’t have all the answers. But I think you’re exactly right. It’s just about saying, well, actually, you know, I’m not happy. I’m not happy. It’s OK to say I’m not happy. And can I have another opinion? Can I see somebody else?

Any questions for Nikki from the group? I’ve put you on the spot now, Nikki.

[Adrian] Well, Nikki, you also got involved with a family in a different country, tell us about that.

[Nikki] After Grace’s diagnosis, obviously I did a shout out to encourage parents not to give up, you know, and there is faith, and there is hope at the end of the tunnel, sort of thing. And I got talking to a lady in the Philippines, quite poverty stricken, and she just opened her heart to me. I explained all that I’ve gone through with Gracie, and her little girl at the time was going through the same. She opened up saying, you know, how much they have to pay. Obviously we’ve got the NHS here.  So, literally right after Gracie’s recovery, I raised some money and send it over to them there. I’m getting upset now, but yeah, because I got all the help that I could for Grace in the end, but seeing this little girl, I just wanted to make her life better.

[Nadine] That’s beautiful.

And I think honestly that is such an important point as well, because there’s lots of research out there as well that is very much influenced by whether people have had money to access care. I always remember when we did the systematic review [of long term complications – LINK] and we looked at all the papers that have been written on Sydenham’s chorea, and there was one study in Brazil, it was, I think, about 300 families, but they’d all had to pay privately – and it kind of touched my heart to think, well, what about the other 600 families that didn’t have the money to pay to access that treatment – and it is a really powerful thing, that there’s lots of areas across the world (because they talk about Sydenham’s chorea being a sort of a third world country illness) where they just don’t have the facilities or the funding to access help.

[Nikki] Absolutely. II feel myself, despite the battle that I had to go through with Grace, so privileged. After listening to this family, because they’re a family of five, and it’s like, do we feed my children? But also I’ve got to get medication for my daughter.

COVID was still happening in the Philippines. They were both out of work and it was just like, my goodness, I will try and do something for them. I mean, I’ve got my own little cleaning business, and I just raised money from my clients within Milton Keynes.

[Nadine] That’s so nice.

[Nikki] I told them the story and yeah, I raised about £1000 and send it straight over to the Philippines. So her medication was then sorted. They had a little bit of a breather – actually, we’ve got food and also her medication sorted for a little while.

[Nadine] That’s just beautiful. What an incredible story.

Any other questions for Nikki?

[Adrian] I was just going to highlight that thing about having to become an expert in your own child’s condition (or your own condition). And unfortunately doctors are good at stuff that’s common and they get less good with things that are, you know, not so common, and not their area of expertise.

As a charity, we are part of a broader network of rare disease groups and you hear the same stories all the time – that somebody develops unusual symptoms, it doesn’t fit with what people know. They often end up having to Google and actually I think Doctor Google is a great friend to those of us who have you know weird, strange conditions that no one seems to understand, because it can actually very quickly point you in the right direction.

But yeah, part of that is standing up, and you said, “being the kind of mother you didn’t want to be”, I think that’s unfair – I think that was exactly the kind of mother you had to be. And I think that’s really good.

[Nadine] And you didn’t allow the hospital to say “no, you’re leaving”. And I think that’s the key because I think sometimes parents feel very overwhelmed, you know, they feel have to do what the professionals say. But actually, you hadn’t had your questions answered.

And you weren’t jumping up and down and shouting. You’ve simply just said, but you’ve not answered my questions. So I don’t feel happy to leave… I don’t want to take my daughter home in the same state that I’ve brought her in. And I think that’s a really powerful thing as well to just say to say to them, stop, I’m not happy, and I need an answer.

Because then the nurse did come back and say, look, we don’t know.  That must have been such a really emotional moment, but very powerful as well, because then they’ve discussed it, and you went to Oxford to the next hospital, to get more tests, which is key when you’ve not got the answers.

[Nikki] Oh, absolutely. And that’s all I will say to other parents now. Just don’t give up – you know your own children. And you know when something’s wrong. And I knew I had to be heard with this one. You know, she’s been in hospital before. But with this one I just knew I can’t keep going home because I knew there was something more to this and seeing her deteriorate before my eyes. And I was just like, just keep pushing, Nikki, you can do this. Keep pushing. Yeah.

And I’m so glad now I did, because some parents would just go home and just hope that you’ll get better. But I just knew it wasn’t [going to go away]. Yeah, and that’s when I had to fight all the way. And then when I got to Oxford, I met the infectious disease consultant, and he said, it’s almost like Gracie was like a guinea pig because, he said, I’ve read about this, but it’s the first time I’ve ever seen it. So he was so intrigued that he could actually see a little girl going through it, not just in a textbook.

He was just fascinated. I spent so much time with Grace seeing how she was developing and how the medication was working.

[Nadine] So on a learning journey together, weren’t they? They were on a learning journey together. We were very fortunate in Glasgow. There was a consultant that had been over to Australia and done work with the Aborigines, so he’d seen quite a lot of Sydenham’s chorea, so he was great in the beginning when we started to have the outbreak.

And one of the paediatricians as well from the diabetes team was very clued up about Sydenham’s chorea, and that massively helped. And as you’re describing, the neurology department and the psychiatry department developed together, so that by the time the 5th or the 6th case was coming in, very quickly we were we were picking it up.

It’s all about experience and I think sometimes the professionals don’t have all the answers and that’s OK. But as a parent, sometimes that doesn’t feel OK. It’s a tricky position to be in.

[Nikki] It’s a learning curve for doctors and nurses, to actually to see somebody in person with it rather than just reading about it, to actually witness it in a little human being.

Leave a Reply

Your email address will not be published. Required fields are marked *