Children with FND

[ValueFamily]

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

I would be very cautious about FND social media tbh and Tiktok specifically. There is clearly a social influence on symptomatology (usual caveats that this of course doesn't mean symptoms are fake or invented) and there is something much more visceral about experiencing someone else's symptoms over video than merely a written recollection. The social/monetary incentives for creators also make for potentially bad spirals.

Just popping back to STRONGLY discourage you, OP, from getting involved with chronic illness social media.

There is a high likelihood that if you go down that path, you and your daughter will be drawn into the social media circles of other girls and young women who have this and other diagnoses, some of whom are genuinely very unwell but others will be exploiting their ill health for views and social media fame. Staying off social media is your daughter's best chance to recover.

Social media algorithms mean that content creators are rewarded (get more views, more followers, and more money) when they have dramatic medical events happen, when they are hospitalised, and when they acquire new diagnoses. There is an incentive not to get better. There is no incentive in these online social circles to recover and have a normal life.

Try to do all you can to keep your daughter engaged with her real world friends and with school. The more you and she engage with the online chronic illness world, the worse her odds are. People on this thread are part of that world and are advising things (like pursuing additional diagnoses and avoiding safe treatments like CBT) that may harm your daughter. Unfortunately MNHQ won't moderate comments like that, but the response even on here shows how dangerous the online world can be.

@Unseenentity Very well said. It's a deeply toxic world for young girls especially. I have sadly seen many deteriorate and get far worse due to exposure to it, and have even seen American girls die due to medical procedures they did not need. Fortunately the NHS offers some defence at least against that.

I can't stand tiktok,
It's making a mockery out of disability/ illnesses and especially mental health issues and I'm not on tiktok, but I can imagine FND is no different to that.

@verysmellyjelly you and your ilk are the most dangerous people to exist online. You want posts moderated or removed ( censored) because they encourage one to question the NHS and to seek out further information and experienced knowledgeable medical professionals. And then you heap on minimisation by actually gaslighting people's real suffering and suggesting people who seek support and signposting online are wanting to be unwell.

I second that TikTok is not a good place for further information.

Certain closed FB groups with moderators do however guide and advise on seeing professionals with extensive experience of assessing and diagnosing. That's what is being recommended.

@Tittat50 No, I have ongoing concerns about posters like you intentionally trying to frighten parents of paediatric patients so that they will avoid or be reluctant to engage with proper evidence based treatment.

You can hurl as much abuse at me as you want. There is a real child involved in this situation.

You're right. It tells you nothing and the treatment is CBT? I'm a huge advocate of therapy btw. But every FND department is in the psychology department when you look at the FND websites. Does CBT treat traumatic brain injuries. It's absolutely diabolical.

Your situation is so difficult but when you become complex with lots of problems piling on ( like myself), this new diagnosis is the perfect get out for medics, job done. The physio helped you. That says a great deal really doesn't it. I hope you have continued access to physio.

You may have mental health struggles but I know all your symptoms are not in your head.

"you and your ilk are the most dangerous people to exist online"

Given that paedophiles and ISIS also exist online, this seems an implausible claim (plenty more worthy claimants may also be left as an exercise to the reader)

"Does CBT treat traumatic brain injuries"

Erm, yes it can be part of the treatments? Literally, look it up.

Not one thing abusive about anything I say Smelly. You are definitely dangerous in your worldview here. Look at what you're saying here.

Refusing to accept this FND stuff is not disengaging with help or professionals. I'm saying the exact opposite. You just don't want to hear it.

I really didn't realise that a psychology department is the best place for managing the treatment of traumatic brain injury? I absolutely will read up more on this for further education in Traumatic brain injury treatment.

@Tittat50 Actually, telling a well informed disabled woman that she and her "ilk" is the "most dangerous" type of person online absolutely is abusive behaviour, and it's very obviously intended to shut down my criticism of your comments. If MNHQ had any consistency in moderation they would remove comments of yours using language like that.

You are absolutely right there is no comparison there and that's hyperbole.

I can't edit so will edit here - incredibly concerning, dangerous, scary, gaslighting. I cannot believe a genuine chronic illness sufferer has these views and am finding it hard to believe.

@Tittat50 So look up my other posts. I have posted many times about my ill health, but a thread about someone else's child isn't the place to expand.

No. We should debate this 100%. I'm sorry OP this is unhelpfully for you and not the place.

Smelly I want nothing shut down at all. I am fervently against your type of thinking. I think discussing this is important and will open up questioning. You seek for the complete opposite not me. I don't want you censored at all.

I believe you are unwell. No I'm not doing that. I enjoy discussing topics and questioning. I really will learn more about TBI after this as I seek to learn and check myself and my views.

I cannot believe you really genuinely feel that people want to be sick and do it for the likes. I cannot believe you think this FND thing is anything but highly questionable in your own situation.( Not the people suffering but the medical professions application of it. )

I believe you're afraid, like most of us, of the very real situation many of us are in and what's really often happening at the hands of the medical professionals. I'd rather believe in the NHS at all costs also, and this FND stuff. The alternative is actually quite unpleasant to contemplate.

I am very fervently against shutting down questioning. I am fervently against gaslighting which is what I know so many doctors can do and FND is the epitome of this - until they further expand and clarify what the heck it is and move it out the psychology dept.! And you are doing the same thing gaslighting swathes of chronically ill people here. You want my post censored. I am not saying ignore that cancer lump and cure it with vitamins here.

You're not the most dangerous person on the internet, that was a massive over exaggeration. Your worldview is scary and to me it's dangerous what you espouse to the well being of people who might believe you. The NHS do not love and care and do right by people quite often. We must question things that don't sit right as scary as it is.

It's funny how FND can mimic conditions like MS or Cerebral Palsy in some of the symptoms yet nobody would have an issue with sufferers of those conditions (and rightly so) advocating for their needs and using aids that may help them (I do agree things like wheelchairs and crutches, canes et c need measuring for a decent fit, it's good to get advice on getting the best but I don't think people are using aids for kicks, not in most cases anyway).

it's as though there is a hierarchy of disability out there, and some disabilities are seen as a lifestyle choice. If this is so, why is is it people from (C)PTS D type trauma backgrounds who seem overrepresented in the FND population and not spoiled entitled people who were over indulged as children? Shouldn't the compassion for us be as high as those with "more accepted" disabilities?

I remember a thread some years back now where a lady with mobility issues and some mental health issues who was investigating the possibility she was on the spectrum posted how she had been given abuse on public transport for not giving up her seat for a young man with cognitive disabilities, because she also needed the seat. The horrible comments that were thrown at this lady on Mumsnet, even implying she was pretending to be sick because she had a long list of diagnoses were shocking. One person was like "you can't just diagnose yourself with any illness you want." The lady posting had been in hospital for her issues and mentioned this . She hadn't self diagnosed but it suited someone's narrative to believe she had.

@CircleInASpiral it's nothing to do with compassion. It's to do with what is safe advice to give a parent of a vulnerable teenager.

Every disability deserves compassion, but a lot of illness centric communities and behaviours online are very unsafe and harmful. You might feel differently to how you do if you'd seen what I've seen (young women seeking out invasive medical care that sometimes kills them in quest of "likes" and money). It's a very dangerous trend and dangerous path. That is the extreme end but it has a noxious influence on many at the milder end too and has wrecked care access for many with legitimate serious illness (who are now associated with "TikTok diseases").

Despite what some have claimed on this thread, I am the last person to blindly endorse the NHS for everything. But they are not anywhere near as bad as the paranoid seem to think for FND, their FND care is decent and in fact better than that for a lot of other diagnoses suggested in this thread! And they are safer as a pathway than diving into social media and hoping for the best. The suggestions other commenters are making on this thread are quite literally unsafe and could cause huge harm to OP's daughter, but MNHQ won't moderate this kind of thing. It's a shame but there's nothing I can do other than offer honest critique.

None of that has any implication about "compassion" for disability in general. If that's what you're reading in, Circle, it's on you.

@verysmellyjelly oh, I don't disagree about the internet . I don't have much experience of TikTok, but I know there is a lot of misinformation or confusing information out there and it's best to stick to professionally run websites. It's just the phrase sick role that grinds my gears. Maybe compassion is the wrong word and I'm not trying to start a fight, honest, but why would someone want to be sick? No teenager who is mentally well wants to be disabled. I've been disabled since my teens after a virus, then I have had various other issues. I was punished and actually abused for it. And I have a FND diagnosis now. I didn't want this. Either the ME in my teens or the FND/dystonia labels as an adult. We don't talk about people with other labels like this, do we? I don't know why all disabilities can't be treated with the same validation.

Thank you all so much. While I think the post has been sidetracked a little, I am pushing for the second review. What ever this is, Its horrible to see

I'm sorry it has been sidetracked with some very unhelpful views on FND. If you are getting a second opinion the national hospital for neurological diseases is a great resource for adult but not sure if they also see children. The staff there are amazing and real experts on treating FND.
it is generally considered more treatable than children and I read a great paper on treating with non epileptic seizures in children by an Australian lady but it sounds like maybe this has been covered if you have a plan in place.

Some really helpful explanations via this website Functional Neurological Disorder (FND) – A Patient's Guide to FND

I hope you are able to access some more support

So sorry for the late reply and update. Turns out she DOES NOT have FND!! The London consultant said she has epilepsy and has restarted her on Keppra and Bucal Madazalam. He is also going to send us a seizure plan and one for the school too!

Oh that's a huge update! And what a relief to be able to have a plan and medication.

This is excellent news.

I am so happy you saw someone with sense and I am so happy you have hope for an improved future with real care and real treatment to address the actual problem.

Hugs to you and your daughter ❤️

As soon as they move every service for FND out of the psychology departments and tell us what it actually is, not pseudo nonsense crap that doesn't tell any one what is actually happening to their body then I'll take note of posts suggesting I'm just being unhelpful.

Now OP has answers I'm happy to say this. And OP, apologies that this wasn't helpful to your situation. But I know with certainty someone will read this and might think, actually, is it possible they got that wrong?

I'm always always open to changing my mind and apologising because I make mistakes and I don't know everything of course. I am already happy to say oh I didn't know that. Someone here explained the benefits of CBT in TBI. I will remember this now and find that fascinating to look into.

I've read every link posted on this thread in order to expand my mindset and knowledge. It has moved forward slightly in that I genuinely believe some neurologists don't think it's mediated by stress and simply an internal interpretation of function within ones mind and body. I believe now there will be a number of well meaning ones thinking 'something is up here, not sure what. The patient is quite anxious. That scan was clear. Hmm. Sounds like FND might be appropriate at this point'.

And I see from reading and research and my own experience that therapy, calming techniques etc help my pain and certainly feed my immune system. ( I have various autoimmune conditions).

I do however remain certain that accepting this diagnosis lightly is dangerous. But, so many of us are exhausted and just want answers and you have to take what you can sometimes. As yet no one has tried FND on me but I'm sure it's in the pipeline with the way the NHS is going. FND 'treament' costs significantly less than the costs of thorough investigations and say medication like I take for autoimmune disease. So FND nonsense will only increase.