A parent of children with Functional Neurological Disorder (FND)

So the situation began in 2017? 2017, that's when my daughter at the time she was 8. She started to show symptoms. She was diagnosed in 2018. That was horrendous because every other day, every other week, there would be a trip to A&E because no one knew, no one knew

To the point that during their trips. We was accused of she actually wanting to not be in school. She just doesn't want to be in school, so she's just throwing a tantrum

Um, no. That has never ever been the case, and anyone who knows her knows it actually. It's the other way around, she absolutely loved school, she still loves school

we. I 78 years down the line, she is studying her A levels. School is what keeps her going

School is what gives her that bit of normality. Uh, We went from not being able to walk. To 4 weeks later, starting to have non-athletic seizures

To 4 weeks later, developing stutter stomach, tremors. You name it, every single symptom that there is out there was coming. We had a neurologist

Within 6 months we were seen by a neurologist after the number of A&E trips and professionals. Put her into a serial cast because they believed that the tendons was not growing at the same speed of the plate of the feet. Let's put a serial cast in because that's what it is to gosh, let's remove that because actually, Something's really seriously wrong with that

Seeing a neurologist quite quick, and that was quite impressive to have a diagnosis on the day, having the brain MRI scans, having in all of that. 22 months later. The actual neurologist turning around to us and goes, we need a second opinion, because even I am not sure what we're looking at

And we did, we got a second opinion, and we're still under that neurologist who actually, when he first saw us, told us her pain is real, her symptoms are real, so let's actually treat them and ignore when someone tells you it's not real, it's all in your head because no, until actually we can give her some medication to help with the pain. It will not get better, and they did within a few days of her starting on a particular medication. We were still a QMC and it was, you know, look, mom, my toes are wiggling and we're talking about

From June till December, her not to be able to bear weight, not to be able to touch, there was no feeling, there was nothing to her toes starting to wiggle. To be discharged within 48 hours, uh, with the wheelchair and with a with a friend to try and walk as much as we could, still having the non-opractic seizures, still having the st, the sta, the ticks, it was still all there. To the 20th of January, she had

A non-athletic seizure that lasted her an hour, and she became a full quadripletic. And that was scary, really, really scary, because we thought, you know, she's starting to walk, she'd we're gonna get better and all of that to actually. With the blink of an eye

Your life changes, your life changes and I will never forget that at the time. We could not get under the local camps team, and it was under the local QMC team. And the therapist said, you know, you just need to remind her, you need to tell her how much you love her

Because it is very frightening for you, but it's much, it's way more frightening for them, and they need to be reminded that things will be OK. And I thought, how are they gonna be OK because no one can tell us when are they gonna be OK, when is she gonna be able to take a breath. No, we all breach

But it's a different breath. So that was 8 months. The 1st 5 months, she was on a mattress on the living room floor because we couldn't get no equipment, nothing, because no one knows about it, or if they know about it, it's all in your hands, or, no, we're not allowed to prescribe you because that's gonna make things worse

Uh, if we go move forward to September 2019, she starts to move again. She starts to Be heard. Again, and we thought, you know, wow, we can have it

I remember we go into, you know, from September we moved to 2020 January 2020, we have everything planned to try and go into the hospital school that she was under. And how nervous but how excited she was, I can go back to school. I can I can be normal, you know, what a 10 year old does, you know, be in school

But even that was too much. No, she didn't want to. Even the tutor at the time noticed within the next month, how exhausting, how triggering, just being in the car to go to school it was

Then we all know what happened in 2020. We move forward and we go to. September 2020

And my 2nd child gets diagnosed with FND. It's red. It's hard to see one child with FND where there is no understanding

There is no. There's nothing. There is nothing

And your second child started to show symptoms? And I did, I phoned the GP and explained to the GP and the GP said you need to go to A&E. So we did, we went to A&E. It gets

The tests done to the point that no disrespect to the medical team. Are you doing drugs? Now, while we don't believe you, so we're gonna do the test. And the medical team left and I, I asked, it's only me and you

And the answer is, Mom, you know I would never do that, and I, I, I believe you, but I want to give you the chance if, come on, we all have been children, we all have been teenagers. And I will never forget when the paediatrician. Comes with the diagnose and It tells me, um, well, I have good news, it's not an organic condition

And I actually asked, not asked, I told a paediatrician. Don't tell me that because I know what you're gonna tell me, and I already have a child with a functional neurological disorder at home. Because yes, your child has a functional neurological disorder

Have you thought about that he might be jealous because he's not getting the attention. That his sibling is getting. And they asked him to leave the room

Because that's, that's not on, that's not on, and I will say within time we had that particular consultant involved with us, and he was one of key professionals in the recovery in all of that. What he did not know, he would try and find out. He would got in touch with London teams and try and find out

But saying that to us. It's not on, it's, it's just not on. We, we don't know everything

Medical professionals don't know everything. But we trust them. We are made to believe that they have the answers

And we know that at times they don't have the answers, and that's OK. It's OK for them to say, actually, we don't know. But we are not gonna accuse you of something that is not true

We are not going to make you feel dismissed. Not lived. Because You then start to wonder

Am I, am I seeing things, am I? No, I'm not, I see how. Both my children. Struggled and struggle

Things at the moment are. Difficult, very, very difficult. Shallow juice

Everything is a challenge, I think everything is a challenge. I think going on to the positive side that I have at the moment is. We have a handful of professionals

That like we are as frustrated because they don't know where to go, and when they go, their doors get shut in their face as much to us. But they come back and they tell us that, you know, actually, it's not working. But that's OK

We're gonna keep fighting it and we're gonna keep doing it and if. One of the teams finds a research paper. Oh, that is quite new

That's what I've been reading about it. Let's try that. That doesn't work

That's OK. We put that to the side. Let's try the next one

And it's something that I know that even though they are medical professionals, even though they go home and they have their own lives, they have their own families. If something do I say at midnight. Clicks of oh they will

I have thought about that, shall we try that? Yesterday. Um, She had physio. And even though physio is quite difficult, she has to actually be transferred into a standing frame and by going on the standing frame

Her palpitations, her blood pressure all drops quite a lot. She still goes, she still does it. And one of the things that I did mention was how her feet is quite painful trying to put any shoes on her actually hurts a lot

When I mean hurts, I don't mean ouch. It hurts. And he did, he went and he looked and he did mention

Slints, and as soon as he mentioned splints, I said no. No. And it's not a no

And they understood that at that point in time, it had to be a no because if I go back to 2018 when she was put into a serial cast on both legs, at 90 degrees straight away, which should never have been done at 90 degrees straight away. And put on the splints, that in itself was traumatic. And last thing that I want is to bring that trauma back to today

But I know if next week it comes and goes, actually that's the only option we have, then we will introduce that and we will try that. She still has the trunk. Of a party, she can still hold a neck

But there's not much more left. So it's quite, quite tricky. To know, to see, to think what this happens, what will happen if actually

Something happens to me. Who's gonna be able to take care of her odd even. Her brother Who has FND and

At times. It has been quite low. And it has been suicidal

If I need to rush with him? What happens to her? If I need to rush you with her, what happens to him? So it's, it's quite tricky to try and battle. A condition that is not understood, that is dismissed. Who do I choose? I think My life My life is quite

Scary. It's quite lonely. You know when you can, you go out for a coffee with a friend

I don't know what that is, but when you go out for a coffee with a friend, you can talk about you. I don't know who I am. Because my world is about

My children being OK, my children being. Happy, celebrating the tiny little things, and when I mean the tiny, tiny little things will be me celebrating that. If my daughter managed to go outside at 10 o'clock at night because there will be no sound, there will be no sunshine, there will be nothing, but you can go outside for literally 1 minute

That to me. It's a celebration because I managed to do that. I managed to get that

I managed to see her smile. It gets very dark. OK

because the simple thing is going for a shower. To be able to have that shower. I, I know that I am not comfortable

In leaving my daughter alone for more than 2 hours. She is not able to self transfer whatsoever if she needed to go for a week. So even if you thought, oh, you still have 2 hours

Your mind still worries. What if actually, unfortunately with her, things can just happen just like that. So I know I will not be able to go and go for that coffee or I have 2 hours

Let's, let's go for a coffee, you know, I can't remember last time I went and bought myself a new top. Go on to a shop, do it online. That's not the point

The point is actually to be able to step outside of a world that is. Sad, a world that is scary, a world that is is so unpredictable that you really don't know how things are at 9 a.m

they are not at 11 a.m., the future is extremely scary

Because so far, there has been no help, no support. If the really good professions that we have, because at this moment in time, she's still under the children's team, and we have known a couple of them since pretty much day one. And this is scary for them because they don't know where to go

It is even scarier for me, because we believe they're professionals, we trust them professionals, we expect them to have all the answers. It is very, very scary. I do not know if my child will be able to live independently

If my child would, for more that one of her goals is, be able to go to university. This year, she's actually said, yes, I still want to go to university, but the course that she wants to do will looking at Sheffield, for example. She's not, she's not gonna be able to

And if I am very realistic with how she is at this moment in time, she will not manage to live independently whatsoever. I'm stronger. Um, how would humour has kept us going

And I think Sometimes it might make no sense whatsoever, but he works for us. OK. Um, I have incredible, incredible, amazing children

Where they have a strength, they have patience. To. Do you know that yes, I saw so and so and so and so Tommy, just get on with it

And today I'm gonna be upset. Tomorrow I am gonna be upset. But next week

I'm gonna smile. Because they don't gonna define who I am, because they don't know what they want about it. We need to have hope

Hope is key here. Hopiski for me as a parent. Hope is key for my child

When we lose hope, there's nowhere else to go, so we need to have that hope, and we need, we need professionals, not just medical professionals. We need the whole team to actually give us that hope, even when you don't believe that there is hope. You need to be honest and say, no, I don't know

But I am gonna try and find out..