[Ulrika’s husband]

I have a question about functional neurological disorder symptoms. In Sydenham’s Chorea, is it common? And how does it usually present? How is it treated?

[Michael]
I can’t say how common functional symptoms would but I can say how we deal with that issue in Glasgow.

What we found was some children with chronic difficulties fell into the problem that adults didn’t understand the condition and there was a lot of discussion about symptoms not being “real”.

That’s the sort of language from schools and from some clinicians, and I think our neurology colleagues and I work together in trying to understand this. And the reality was, of course, when somebody has a severe neurological problem and they have symptoms of that problem which don’t entirely match what people might expect. It’s either that they have an unusual neurological problem or they have a problem which is actually more psychiatric than neurological, and that people get very caught up on these issues.

But the reality was that the children who were presenting more complex, possibly functional symptoms, had also had very significant Sydenham’s chorea, and undoubtedly would have a vulnerability.

The idea that the brain and the way of living have been affected by the illness and trying to disentangle the functional from the organic felt completely fruitless because ultimately Sydenham’s Chorea has so many psychological effects on a neurological basis anyway. So I think what we intended to do was to try and just help people to move away from that question and deal with problems as they presented, and just as you would with a child with a spinal injury who was not motivated to walk, he wouldn’t say “Well, you’re not trying… it’s all in your head.”

You would say “you’re not trying” in physio. How do we make it easier for you to do better? So with the child with a functional symptom we wouldn’t start saying “this isn’t part of your Sydenham’s”. We’d be just saying what is it we can do to make this better for you.

I mean, it’s difficult in epilepsy, but at least we’ve typologically based seizures. You can compare very carefully between a true epileptic seizure or psychological seizure but in a condition which is as variable as Sydenham’s Chorea, trying to make a definite statement that something is organic or not organic in origin is, I think, unwise.

In general we managed to get around that. There are some professionals who struggle greatly with anything that doesn’t look exactly like you’d expect in the textbook, but what matters is how you help the child move forward, not what you call it. So that would be my comment.

[Nadine]
And I think that’s a really important comment, Michael, because I think we do get stuck on labels and diagnosis. And I think one of the things that I learned and valued the most during my time at the Sick Children’s Hospital was the fact that we didn’t use labels and we didn’t use diagnosis to inform the care and treatment that we gave that child, we would bring them into the room, parent alongside, and say “how can I help you today?” And I think that is the really important question.

And because children can get very stuck on “I’ve got a problem and I’ve got this illness and things aren’t going to get better”. And I think, Callum, this morning, you know, has started the day off perfectly by demonstrating that actually by his parents not labelling him as that poorly, unwell child, he was able to look at his mum and dad and to think, yeah, I’m not OK at the minute, but actually we’re going to just keep looking forward and we’re going to keep planning forward. And we’re going to keep thinking about the positives. And I think that it is really important not to get stuck on the label and or the diagnosis and what the criteria for that is. And once you understand, that it is Sydenham’s Chorea.

[Mike]

 I just thought it was fantastic the way that Michael put that and I agree completely and you made me think people are distracted by epilepsy where you have to make a decision about whether an episode is epileptic or not, because there’s an immediate treatment decision. And I think clinicians may be take that attitude over to other diseases where it should just be more about improving symptoms. You don’t need to assign the label. It’s not so important.

[Nadine]
And schools do that as well, don’t they? Schools want the label because they need the label to get the funding – though actually that’s not true, when you look at the criteria around how to access funding. But they get very fixed, if they get that label, they’ll just get that little bit more funding. So education plays a great part in that as well, especially for parents as we know with Sydenham’s, where they’re really struggling to get them into school, they’re really struggling with attendance and the work demands and school are going, well, we need a label to be able to access the funding for that. It can be really difficult.

[Ulrika ]
So in our case, our daughter started presenting this relapse with a severe difficulty walking and this is the symptom that you know our doctors have, you know, taken out of the list of symptoms that she’s presenting and said well, this is probably a functional. However, she started presenting with this difficulty walking when she relapsed more or less at the same time. So what you’re saying is we couldn’t really possibly say it’s functional or it’s part of Sydenhams or like it’s a Chorea like movement at this point in time, do I understand correctly?

[Michael]
It doesn’t really matter. Your daughter has had a label of Sydenham’s Chorea, so she has a brain vulnerability which can manifest in many ways, including with psychiatric symptoms. And the point is, how do you get her walking again? Not what is the precise mechanism in this unusual child with her unusual brain condition. So really, it’s about the way forward.

The only point I would make is when it comes to therapies, drug therapies, I mean, Michael’s already made that point in terms of epilepsy. I’ve certainly seen with other autoimmune conditions affecting behaviour that if the assumption is the best treatment is going to be a drug therapy, that tends sometimes to complicate matters, whereas sometimes if you stick to the rehabilitative approaches of occupational therapy, physiotherapy, psychological therapies, you don’t get into arguments about whether this symptom or that symptom needs a medication.

So I would I would always focus on the things that nobody is going to argue about, because I think arguments about the origin of symptoms are really bad for children, actually. And it’s really good to try and find a consensus that everybody can move forward with – and that isn’t always easy, I know.

[Nadine]
And I think having somebody, whether it’s a physiotherapist or an occupational therapist or a school counsellor or a therapist or a nurse, or a psychologist for the child to speak to is really important as well. I think just having someone available who the child feels they’ve got a relationship with and they can share and it doesn’t have to be about recovery or getting better. It’s just about having that safe space where they feel they’re being listened to and that that can bring great wealth to the recovery. And because it’s just a space where they feel they get to be understood, I think it’s really important as well. Sometimes we can get too focused on the treatment and the recovery and actually sometimes just having a safe space or a safe person to talk to that’s different to maybe the doctor or you, their parents, it can bring a wealth to the recovery as well.