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

@Tittat50 CBT is part of an appropriate evidence based treatment model for FND.

I do have these conditions which is exactly why I don't support them turning into social media trends. Blanket self diagnosis does nothing but harm.

NB, I am not in any way criticising the OP. She has done nothing wrong here!

Regarding a wheelchair, it will only further cement this DD in the sick role and increase deconditioning. There are very good reasons to avoid using a wheelchair unless genuinely clinically necessary.

What, like graded exercise for M.E?

The NHS is capable of making very huge errors.

Also lol I don't work for the NHS, in fact I am severely unwell, totally incapacitated and can't work at all. Search my other posts if you want to see me talk about it. I have comorbid conditions. Won't discuss more on this thread as it would derail, but it's genuinely funny to be accused of working for the NHS. I have (diagnosed by a professional,
, not a self diagnosis) PTSD from my experiences with the NHS, actually.

FND is not ME. CBT is a highly regarded and evidence based treatment for many conditions, it is so irresponsible of you to sow fear that may make the OP not want to have this treatment for her daughter. Seriously, consider what you are doing and saying. It's outright fear mongering to try and stop a parent accessing treatment. Her daughter can make a full recovery if she gets proper treatment! @Tittat50

Well I agree with all you said in this post. I can't believe many would revel in having this.

I don't think anyone should self diagnose. One should seek out an expert if after enquiring they feel it is relevant.

I have not self diagnosed. I realised myself after a while and then was thoroughly assessed and it was confirmed multiple times by knowledgeable professionals.

No one is doing that which you are accusing me of smelly. She needs to be asking more questions and not walking away with FND and a CBT referral in 5 years time. You are applying something to my posts that I'm not saying.

I'm shocked that you are impacted as you are and you have those views. I am not the type to search people's posts to catch them out. I believe you if you say you're having a rotten time. I hope for everyone to get the answers and treatment they deserve.

FND will never sit right ever. I accept this is of no help to OP in understanding what's causing all this for her daughter. I cannot answer that question.

Only if you view a wheelchair as a symbol of sickness. If you view it as a neutral tool to access the world, it can be just that. If the choice is use a wheelchair and keep your normal routine to get to school/ work/ out to see friends, or not use a wheelchair and be housebound or bedbound on bad symptom days, which do you think is going to make a person feel sicker/ less "normal"? Plus, being a wheelchair user is a pain in the arse. Nobody is prolonging that to stay in some kind of subconscious "sick role", especially not a kid.
Obviously any mobility aid should be used under the guidance of a professional, such as an occupational therapist. Especially for a child. But also, medical professionals (apart from OTs, usually), can sometimes be very limited when it comes to thinking about things to improve quality of life. And obviously NHS wheelchair services are a joke. The scope for clinical indication for a wheelchair is way broader than the scope for wheelchair services providing one.

OP's daughter might benefit from a referral to occupational therapy, given that none of us will be able to advise what aids might be useful in her case.

Exactly. It just opens up more options. Like owning a car. Or owning different pairs of shoes for different occasions

I went for a walk yesterday, and Ice skating today. Tomorrow we are planning to go out and I will use my wheelchair. That's not because I am faking it or because I want to pretend to be sick. It's because I have overdone it and the nerve receptors on my muscles aren't working well any more so if I don't use my wheelchair I would be at home lying down. I quite simply cannot send signals to my muscles. It's like a phone with no signal. The problem isn't "in my head" . Whenever I feel well enough the wheelchair is left gathering dust

Using a wheelchair when I need to stops me missing out on so many things.

I'm a full time wheelchair user so not anti wheelchair, lol. But they should come via the NHS, not via people just deciding they randomly fancy one.

A wheelchair should come from the NHS. You have to be measured for one.. one size doesn't fit all.
If you want to purchase your own.. get professional help on the sizing .
Also FND is very real.
Usually accompanied with EDS/ Fibromyalgia/ PoTs/ sizeures/ spasms/ tics and on average another 100 side effects.
I paid private for my daughter to see an Harley Street neurologist.. one of the best in his field .
She's not in a wheel chair yet.. but does use aids and has an adapted house .
The covid vaccine has a lot to answer for... she was a fit and healthy 28 year old before.

Why? The NHS will only pay if your mobility is incredibly limited. There is a whole spectrum of people who have fluctuating disabilities. I can be active at times and other times unable to walk. If I waited for the NHS to fund me I would miss out on huge chunks of life.

@Moier this is not to try trip people up. But I wonder what they are saying when diagnosing FND. What is the explanation or definition of it and is there treatment? I believe the symptoms are a physiological fault or disease not a malfunction ( unless EDS is the only cause and that is a physiological defect of collagen ) CBT isn't changing this and a psychologist isn't helping either. Yet this is what FND departments are all centred upon. Hmmm.

I feel the same about fibromyalgia. It's another waste basket diagnosis. Like FND, something is wrong on a very biological level. Up to 50% on a recent study diagnosed fibromyalgia actually had damage to their small fibre sensory nerves. This causes severe pain, burning, fatigue. I have this condition, it is not fibromyalgia but without my diagnosis and pursuit of testing, I would have been told fibro.

I don't doubt the physiological problems. I'm actually saying the opposite. Fibromyalgia also has had questionable treatment by medical professionals. This I believe may be changing as I believe there's a move towards the belief that it's an autoimmune problem. ( I have Sjogrens. A lead cause of sensory neuropathy. Exceptionally difficult to diagnose if you don't have antibodies in the blood). There's an EDS link as so many of us have it.

They should, but they don't. In every NHS trust I've lived in since becoming a wheelchair user (three across England and Wales), you only meet the criteria if you need it in the home, and your home is adapted. And you can't have a powerchair if you have any kind of seizure. And even if you get a wheelchair grant instead of an actual chair, you aren't allowed to buy a powerchair that isn't crash tested.
I usually don't need a wheelchair to get to the bathroom, but I do need it to get to the end of the road. I have seizures; I can operate a wheelchair safely within this but it's a blanket rule. And I can't drive, so to get lifts from different people I need a lightweight folding powerchair, none of which are crash tested. So, the NHS is not going to give me a wheelchair. My NHS physio, however, agreed it is an essential part of my care plan.
The answer is better wheelchair services. If we can't afford to issue wheelchairs to everyone who needs them, then we at least need an OT service for assessment for those who don't fit the (non-clinical, cost-based) criteria. The answer isn't telling anyone who doesn't qualify for NHS wheelchair services that they shouldn't be using a wheelchair.

Also, wheelchairs are incredibly expensive and mean you can't get into or around loads of places. Nobody's just deciding to drop a few grand cos they fancy it.

Exa

Sorry OP. I feel we're derailing the thread - myself included. I hope at least it being in active longer means someone with experience with a child with FND comes along to help. I think it's normal for you to feel like you're at your wits' end. Chronic illness is stressful enough as an adult, never mind for a child - and when you're watching your teenager go through this it must be so hard. It's worth asking if there's a neurology rehabilitation centre in your area. There isn't one in every area, but if there is, they can be very helpful with referrals to a number of specialists, and even help with anything else that might be going on. And the FND Hope charity is so useful to know about, especially if there's any parent support groups (I know they have patient groups). If they don't, it's worth emailing them to ask about setting one up - they're very responsive to ideas in my experience.

Exactly! It's never a fun or frivolous decision. I held off for years. Missing out on things because I couldn't walk on a bit but certainly couldn't walk miles. Missing out because my periods made me too weak to walk. Missing out because I didn't walk somewhere then had to spend too long in bed.

Getting one has been life changing, I no longer feel housebound , I no longer have to say no to shopping trips or a trip to the zoo or a museum. It gave me my life back.

Two teenage daughters (17&19) who have been lumped under an FND diagnosis.

One is much worse than the other;her condition can render her unable to even walk and can't even get to the bathroom unaided during a flare up.

It's shitty and frustrating

I'm not a child but I have an FND diagnosis.

Similar to your daughter I was in an accident but I had fairly major surgery afterwards as it was quite serious.

I have diagnosed physical nerve damage to my foot (which was quite badly mangled in the accident) - peripheral neuropathy and also CRPS.

I also have an FND diagnosis as sometimes I lose sensation and motor control in the mangled foot.

In cases like your daughters where there is a fairly obvious physical trigger and head injury FND is an obvious diagnosis as it's almost certainly trauma induced problems.

If the brain is damaged it can malfunction and hitting it hard will damage it.

I haven't done the whole CBT/therapy route for treating FND however I have found that treating my food gently and not pushing it too much really reduces the times when I lose sensation and motor control.

Seizures after a traumatic brain injury are a known thing and there is information out there.

msktc.org/tbi/factsheets/seizures-after-traumatic-brain-injury

Educate yourself.

It's not the time or place to ask you with all that you are dealing with. That's really insensitive of me.

Hi, I'm an adult with FND diagnosis and very mixed feelings about it.

It started off for me when I was in my early 20s (now in my 40s) as a reaction to an anntipsychotic medication I was given for my mental health, resulting in painful muscle spasms, loss of balance and fine tremor. They put me on a drug to counteract the symptoms called Procycledine (sp?) And described it as a form of dystonia. I have suffered for a long time and needed help getting around and in my home (need to use a stick to get round on bad days still) but hadn't really seen anyone about it for a long time .

I have a past history of psychiatric issues including BPD/EUPD, and CPTSD, and also suffered proper actually diagnosed ME/CFS since my early teenage years, my experience with doctors had been mixed, some have been great, others horrible. I am obese as a result of binge eating since childhood and trauma including sexual abuse and hormonal issues (PCOS, again properly diagnosed and treated but not fully successfully), so I'm a bit of a heatsink patient for doctors especially when they see EUPD/BPD on my records.

So I was reluctant to see anyone but in May 2018 I eventually got an appointment after three years with a movement disorder specialist who says he doesn't think I have dystonia anymore but FND. He referred me to a neuropsychiatric department . They confirmed the diagnosis. Because I needed continued help with social services regarding care around mobility needs I reluctantly accepted the diagnosis but couldn't get my head round it .

I was eventually told to continue having mental health t treatments (I had done DBT on NHS) and now was having some trauma therapy privately, but they did say I could see a physio. I agreed. I didn't think it would do any good, but I did find it has helped with my balance and spasms a little.

I'm nowhere near cured, but I'm not using my cane 24/7. I have it with me because I still find myself needing it and I have to pace myself carefully. So I have found the diagnosis hadn't been 100% a terrible thing for me but I still feel a bit unconvinced by it.

How can this be in my head? I don't understand it . I'm not playing a sick role as a previous poster was suggesting about FND. I didn't come from a family where illness was acceptable in fact when I had ME the abuse from my father increased. He taunted me and told me how I was lazy fat worthless etc over it. The first two things I had heard before but lazy was a new one. The BPD was also treated in the same way as was my sister's severe depression, which I suspect now was to do with the abuse we went through.

How can someone be playing a sick role when they were brought up in a family where Sickness was actually punished and disabled people were brutalized . I struggled at school due to what I suspect and some teachers suspected as undiagnosed dyscaluclia (parents refused to have me tested when teachers mentioned it) and my lovely fathers reaction was to tell me he would beat it out of me. So I'm not convinced about the sick role thing .

Though sometimes looking at my list of diagnoses I expect someone ignorant would declare it some kind of Munchausens bingo.

I don't have any advice or experience with FND. I just wanted to suggest that if you or your daughter are on tiktok, there are many people with FND that share their daily experience with the condition. It's been an eye opener for me. And if it wasn't for these pages that I came across by chance, I would never have heard about FND.
You may not learn anything new from these content creators, but maybe you or your daughter might get some comfort or reassurance hearing other peoples experience with it, by following their pages and watching their content. I know it's an extremely difficult and very unknown condition, but it's also a hugely life changing condition so my heart goes out to your daughter.
Sending love to you and your daughter x

@CircleInASpiral
We have some of the same diagnosed conditions and I'm also obese and the treatment I have gotten because I have mental health conditions on my records.
So any of my symptoms are either made up, because I'm fat or because of "anxiety,BPD,bipolar"
The thing is I do have structural issues with my brain and increased pressure in my brain and behind my eyes but I'm told it's FND but telling anyone that it's like oh so it's a made up illness then 🤬

That must be so infuriating for you! This is why I just don't like the FND label. It seems to mean everything and nothing, all at once. As a PP said, "wastebasket diagnosis."