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Children with FND

76 replies

ValueFamily · 02/01/2025 17:36

Im just wondering and at my wits end with FND. Is there any support groups or other mums here with children with FND. My daughter is 14 x

OP posts:
Tittat50 · 02/01/2025 17:40

Do you genuinely believe she has FND?

ValueFamily · 02/01/2025 17:59

Tittat50 · 02/01/2025 17:40

Do you genuinely believe she has FND?

I know there is a lot of controversy around FND. However yes she has been diagnosed with it last year

OP posts:
Moier · 02/01/2025 18:09

My daughter has it.. she's 32 and got worse in the last 4 years.. ( neurologist says seeing loads getting worse after covid jab) she's had her house adapted.. uses a walker .. aids for bath/ shower etc.
Some days she just can't make her legs work.
She has siziures .. also she has EDS.
She has good and bad days.
I pay for a carer for her.

CaptainBeanThief · 02/01/2025 18:14

to anyone who thinks FND is made up, can go fuck themselves,
I have none epileptic attack disorder and other FND associated disorders it is under the care of my neurologist however my psychiatrist also takes over some aspects of the care,
Also no the seizures aren't fake - it's very trauma based but I don't decide hey I'm gonna drop on the floor and twat my head off the table.
You see millions of posts and people on the internet saying it's made up bla bla bla but try living with it, it's very confusing and very much an illness recognised by medical professionals.

ObieJoyful · 02/01/2025 18:18

My daughter has it. She also has epilepsy, so there is potential for her to have unnecessary emergency meds during a seizure. It doesn’t matter how many care plans I write- an ambulance is called every time she has any kind of seizure, even though they’re easy to tell apart (if you read the fucking care plan).

Tittat50 · 02/01/2025 18:24

ValueFamily · 02/01/2025 17:59

I know there is a lot of controversy around FND. However yes she has been diagnosed with it last year

I would never in a million years accept a diagnosis of FND. It is controversial because it's made up nonsense. It is stigmatised for a reason, because it's nonsensical. Anyone can say it's what you have with not one shred of objective evidence to support it. And then you're off their hands and no further investigation.

I would say your poor daughter most definitely has something going on. Like the poster above,EDS is enough all on it's own to cause significant problems. I usually encourage any young lady told FND to consider EDS and POTS and mast cell activation.

I have EDS and this is why I've jumped on this. I have a number of quite awful neurological problems including POTS and and an autoimmune sensory neuropathy. The NHS have very little clue, they probably receive a half hour training session so I was fobbed off for many years. I had no choice but to pursue private testing and assessment.

I watched a dreaded TikTok video a while ago. This lovely young woman had the most significant tremor and frozen neck and shoulder. It was so apparent that anyone would know something was up. She was told FND. It's absolutely unbelievable unless you have experienced incompetence and gaslighting on a scale many young with conditions like EDS or ME do.

FND is the perfect get out for any neurologist. To say that most I have encountered have been misogynist, lacking expertise and moronic is an understatement.

Tittat50 · 02/01/2025 18:28

@CaptainBeanThief I believe you absolutely have something very physical wrong! You have seizures so you clearly have a condition causing it.

The diagnosis of FND is the problem here. Being fobbed off withFND is the problem. The people telling you FND are the ones to be angry at not those saying we believe you genuinely have something very physically wrong with you ( e.g me!)

CaptainBeanThief · 02/01/2025 18:37

@Tittat50
I do believe I have been fobbed off, probably as I have mental health issues they quickest way they could associate with my seizures with is FND. 🤬🤬

WinterCoatsHelp · 02/01/2025 18:41

@Tittat50 FND is not a wastebasket diagnosis, it is a rule-in condition with positive clinical signs. It has been used badly by neurologists, and misdiagnoses happen as they do with any condition. It is also often very badly explained by clinicians, even when a correct diagnosis is made. However, this does not mean that any and every diagnosis of FND is incorrect.
It is a neurological condition, current research suggests it is a brain network disorder. When diagnosed properly with the positive clinical signs, it is a valid diagnosis, and there are plenty of neuros who do this. It doesn't mean that you're being fobbed off or that the clinician doesn't believe you.
It's often comorbid with EDS/ hypermobility spectrum disorder, POTS, and MCAS. This also doesn't mean it doesn't exist. Getting diagnosed with one of the common co-morbidities doesn't undiagnose FND, unless FND was a clear misdiagnosis. In my case, I have HSD, POTS, and FND. HSD does not account for my neurological symptoms. I understand in rare cases hEDS/ HSD can cause subluxations in the neck which may cause paralysis or other symptoms that may be misdiagnosed as FND. This would not result in the positive clinical signs required for a correct diagnosis of FND.

I understand your anger, and that you're trying to protect others. However, there are many of us with accurate FND diagnoses, and having to argue about whether or not we have it is tends to derail things when asking for support. I'd always advocate for screening for hypermobility disorders and POTS alongside FND, but that doesn't mean that a diagnosis of a more easily observable, but non-neurological, condition, replaces a diagnosis of FND. And seizures are either epileptic or non-epileptic/ functional/ whatever other terms. Insisting that seizures that have been diagnosed as non-epileptic must be something "serious" that isn't FND doesn't make sense; that's just the name for them.

Tittat50 · 02/01/2025 18:41

CaptainBeanThief · 02/01/2025 18:37

@Tittat50
I do believe I have been fobbed off, probably as I have mental health issues they quickest way they could associate with my seizures with is FND. 🤬🤬

Being unwell or having physical issues makes anyone anxious! I get really anxious and cry alot when my immune system is going nuts. It's awful because then if course they can fob you off.

I don't have any easy answers and I know it's like dropping a bomb and running off when I say these things.

CassandraWebb · 02/01/2025 18:45

Tittat50 · 02/01/2025 18:24

I would never in a million years accept a diagnosis of FND. It is controversial because it's made up nonsense. It is stigmatised for a reason, because it's nonsensical. Anyone can say it's what you have with not one shred of objective evidence to support it. And then you're off their hands and no further investigation.

I would say your poor daughter most definitely has something going on. Like the poster above,EDS is enough all on it's own to cause significant problems. I usually encourage any young lady told FND to consider EDS and POTS and mast cell activation.

I have EDS and this is why I've jumped on this. I have a number of quite awful neurological problems including POTS and and an autoimmune sensory neuropathy. The NHS have very little clue, they probably receive a half hour training session so I was fobbed off for many years. I had no choice but to pursue private testing and assessment.

I watched a dreaded TikTok video a while ago. This lovely young woman had the most significant tremor and frozen neck and shoulder. It was so apparent that anyone would know something was up. She was told FND. It's absolutely unbelievable unless you have experienced incompetence and gaslighting on a scale many young with conditions like EDS or ME do.

FND is the perfect get out for any neurologist. To say that most I have encountered have been misogynist, lacking expertise and moronic is an understatement.

This is how I feel.
Not that the person is faking their symptoms, but that the doctors are copping out of getting to the bottom of the cause.

I have Myasthenia and quite often people battle for years with symptoms/misdiagnoses before getting a diagnosis. Partly because testing has evolved and improved,. partly because doctors often give up testing too soon if it doesn't fit the normal pattern. And that's just one example

However,.the more important question (whatever the cause) is what are your DDs main struggles at the moment? Maybe we can help with some ideas

Tittat50 · 02/01/2025 18:51

@WinterCoatsHelp I think you raise some good points there.

When someone is diagnosed with various conditions like you or I, it feels less concerning regards the intent of clinician diagnosing FND on top of what we already have confirmed.

A young 14 year old lady with only this diagnosis I find incredibly concerning and it's upsetting as I know there will be more to the story. But I accept there's only so much poor OP or any of us can do when the medical professionals are so clueless regarding EDS and other co morbids.

You make a good point in that the true understanding and definition of FND I believe may be interpreted completely differently according to who you see and who assessed you.

I watched a video about 4 years ago wherein a proponent and clinical expert in FND was demonstrating how to trick patients into moving body parts they said felt weak or abnormal from a sensory perspective. It was without question an attempt to prove a psychological cause; hysteria by another name.

But I do agree there will be some who will see it as a malfunction that is not psychological. It's just trying to figure out who 🤷‍♀️

Ah yes ref the cci nightmare. I'm more of the sense this is the cause of a great deal of neurological malfunctioning - never to be proven of course . ( I imagine you know the drill with this one).

Tittat50 · 02/01/2025 19:01

@CassandraWebb really good point ref trying to help OP. So here's what I'd suggest...

Join a UK EDS group on FACEBOOK. I hate FB but for this I think it's really helpful. Diagnosis is so difficult because GPs don't understand it. The assessment criteria is so poor it will certainly miss people. We have no blood test at this time for EDS 3. A private assessment would probably cost about £300. Would it be life changing? Maybe not but just knowing what you're dealing is in my mind essential I paid and saw a leading expert. So much made sense after this.

Join a UK based POTS FB group -
People can self manage this and self test at home using BP cuff and heart rate monitor. You can treat at home with certain measures. I for example drink 3 litres of electrolyte water daily, I wear compression stockings, I have vasopressor medication, I take a beta blocker. I eat extra salt to increase blood volume.

Mast cell activation -

there are FB groups for this also. Most of us take antihistamines such as fexofenadine every day. Avoid high histamine triggers such as foods and sprays.

Diet - try gluten free and dairy free. Supplement iron and magnesium. Get private tests done at home to monitor vitamins etc. ( Thrive or medichecks for example).

I could go on but I think this is a good start!

WinterCoatsHelp · 02/01/2025 19:16

Tittat50 · 02/01/2025 18:51

@WinterCoatsHelp I think you raise some good points there.

When someone is diagnosed with various conditions like you or I, it feels less concerning regards the intent of clinician diagnosing FND on top of what we already have confirmed.

A young 14 year old lady with only this diagnosis I find incredibly concerning and it's upsetting as I know there will be more to the story. But I accept there's only so much poor OP or any of us can do when the medical professionals are so clueless regarding EDS and other co morbids.

You make a good point in that the true understanding and definition of FND I believe may be interpreted completely differently according to who you see and who assessed you.

I watched a video about 4 years ago wherein a proponent and clinical expert in FND was demonstrating how to trick patients into moving body parts they said felt weak or abnormal from a sensory perspective. It was without question an attempt to prove a psychological cause; hysteria by another name.

But I do agree there will be some who will see it as a malfunction that is not psychological. It's just trying to figure out who 🤷‍♀️

Ah yes ref the cci nightmare. I'm more of the sense this is the cause of a great deal of neurological malfunctioning - never to be proven of course . ( I imagine you know the drill with this one).

Thanks for reading and not getting annoyed with my arguing!
In the end we all want the same thing - for ppl with chronic illnesses to stop being treated like shit by medical professionals. I really do agree/ empathise with the issues of medical professionals jumping to FND without proper testing when there's a history of mental illness (I've met some bloody awful healthcare professionals...), and with them insisting absolutely everything is down to the FND once it's diagnosed 🙄.

The thing with "tricking" is so interesting. Because there are some sensori-motor components, and things like compression gear and external focus can help with FND for many people. For example, I discovered that I don't tic while playing a musical instrument, so now if I need to redirect a painful tic I imagine playing my instrument complete with the hand movements (like air guitar but more accurate). That's distractibility - it's not the same as me being able to think or willpower my way out of it. The problem is, for every enlightened PT or neuro rehab specialist who's using the potential for sensory integration work in a useful way to improve quality of life, there's one dick who's saying if sensory or distractability "tricks" work, that means the patient is faking. Or, possibly worse, that these techniques mean a patient is cured rather than it being a management technique. Which is a fundamental medical misunderstanding on their part, really. thereactivept on instagram has some really useful information on all this stuff, she uses it in her rehab programs (US based and probably extortionately expensive, but still interesting). She also does summaries of the latest research papers, especially on the interactions between FND and hypermobility etc. I like to go and read the papers afterwards.

OP definitely look her up as well! Being informed can really help. She also doesn't subscribe to the bollocks often peddled that people/ children with FND shouldn't ever use mobility aids, instead understanding that (along with supporting co-morbid conditions) they can be essential to improve quality of life.

CassandraWebb · 02/01/2025 19:22

@WinterCoatsHelp yes I agree, getting a wheelchair (electric for me) has been transformative. Whenever I can walk etc I do but on bad days it means I am not confined to the house. Things like that can make so much difference to quality of life

ValueFamily · 02/01/2025 19:30

Thank you I feel exhausted and guess I should explain a little. We have been going back and forth to hospital appointments, GP, A&E and neurology.

The symptoms she has all came on suddenly on July 23, aged 12. She was in school, nearing the bottom of the stairs, when she fell, hit her head, split it wide open, and had a seizure for about 15 minutes the paramedics gave her drugs to stop her seizure. She also lost bladder and bowel control. Ever since, she has had countless seizures, most of the time wetting during it. They did diagnose her with epilepsy but then changed it to FND. We had rescue medication and a seizure plan, but they said because the medication didn't work when she had a fit then, they stopped it. I don't for one second agree with this. We are waiting for a second opinion in a London hospital. The FND diagnosis is really recent some things have changed after a seizure she has numbness down her left side. It totally disables her when it happens and lasts from minutes to hours. She has an appt Mid Feb for her review

I am totally lost and have come here to seek help from other parents really! Thank you Ill take a look at all the facebook groups x

OP posts:
verysmellyjelly · 02/01/2025 19:36

@Tittat50 FND is a real condition and you're not helping anyone by saying that people shouldn't accept it. Encouraging people to seek out weak diagnoses of( and especially to self diagnose with!) EDS, POTS, MCAS etc is the last thing that patients with these already stigmatised conditions need. We are already a laughing stock in part because of their popularity on social media.

All these conditions including FND are real, but the solution is careful and correct diagnosis, by experts, which it sounds like OP's DD has received. You're not her daughter's doctor and shouldn't be suggesting alternatives.

Tittat50 · 02/01/2025 19:37

Aw OP this all sounds awful.

I would just be as assertive as you can when you have the appointment. Your concern is that FND kind of offers nothing, no help regard treatment when there's no doubt there is a physiological problem here. I'm guesses scans were carried out. I wonder what their thoughts are on following this up seeing as she split her head open.

I don't know enough about anti seizure medication but I would want to fully understand the breadth of possible options.

Many people on the EDS group have seizures. I appreciate this situation is different to the EDS situation but there will be people with experience of dealing with London hospitals/ neurology.

verysmellyjelly · 02/01/2025 19:38

@ValueFamily Stick with the diagnoses the NHS is giving you. These Facebook groups are full of very troubled people, many of whom want to be in the "sick role" and are determined to seek attention, get newspaper articles written about them, and so on. Assuming your goal is for your DD to eventually make a full recovery and not become an influencer capitalising on illness as part of her identity, you would honestly be best avoiding them.

verysmellyjelly · 02/01/2025 19:39

Tittat50 · 02/01/2025 19:37

Aw OP this all sounds awful.

I would just be as assertive as you can when you have the appointment. Your concern is that FND kind of offers nothing, no help regard treatment when there's no doubt there is a physiological problem here. I'm guesses scans were carried out. I wonder what their thoughts are on following this up seeing as she split her head open.

I don't know enough about anti seizure medication but I would want to fully understand the breadth of possible options.

Many people on the EDS group have seizures. I appreciate this situation is different to the EDS situation but there will be people with experience of dealing with London hospitals/ neurology.

It's not true at all that FND treatment offers nothing. Many paediatric patients are successfully treated for FND. You are literally posting misinformation.

Also, seizures are not a symptom of EDS. People with EDS can have other conditions but so can literally anyone!

What you're posting is so incredibly misleading to the OP.

verysmellyjelly · 02/01/2025 19:41

Also @ValueFamily don't get your daughter a wheelchair unless recommended by the NHS.

Tittat50 · 02/01/2025 19:52

@verysmellyjelly you can't surely have these conditions such as EDS writing what you just did.

OP is being advised to learn, to explore, to challenge, to ask questions. Accepting FND under these circumstances is incredibly dangerous and I will always feel that until we move further forward. EDS is the route cause of multiple issues and co morbids and I feel incredibly satisfied that my posts will help at least one person to question, to challenge, to explore, to learn more. Maybe FND is applicable in some cases ( still not buying it). OPs situation as per update is quite unique and I would not be walking away with FND, goodbye, if this happened to my child!

Don't get your child a wheelchair unless the NHS advises? Let's say she did need or might benefit from a wheelchair, you'd be waiting forever for the NHS to offer one up.

The fact you think the NHS is the font of expertise is not surprising but it might help for some to open their eyes, yourself included. Sounds to me like you work for them. No clapping for you today smelly.

Question - always 🙏

Toughsewing · 02/01/2025 19:59

Your situation is not unlike mine. Son diagnosed w FND at 12 - totally out of the blue, became paralysed and unable to speak. Test upon test upon test came back clear. Impossible to believe he didn’t have an illness, but they were right (even GP couldn’t believe it), and after very intensive in patient support he is pretty much back to normal. Functional symptoms are really difficult for everyone - they ARE real, as real as any illness. But so hard to address.

PM me if you’d like to chat more

Tittat50 · 02/01/2025 20:15

I just looked at the FND Hope website to gauge how things may have moved on.

As I suspected, almost every regional FND service and centre comes under psychology, psychiatry and I saw one neuropsychiatry.

Treatment includes CBT and other psychological treatment approaches. Seriously, is CBT the answer to someone experiencing seizures after they fell and whacked their head open.

So sorry this has happened OP. Best of luck, I appreciate this isn't giving you the answers you need and not helpful to you right now.