Report transcript in: A parent of children with Functional Neurological Disorder (FND)

Please Report the Errrors?

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.

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.

4 weeks later,

developing

stutter stomach,

tremors.

You name it,

every single symptom that there is out there

was coming.

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.

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.

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

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

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 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,

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 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.

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,

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.

Toggle

Posted By

Author

CCollier

Post date

27/06/2025