DD's lost use of legs

[MrsArchchancellorRidcully]

Dd is 14 and befor Xmas started with terrible nerve pain in her right leg. Ended up losing the feeling in her right foot and since then had to use crutches. Lots of medical tests. MRIs etc showed nothing. Sunday just gone she woke up and her left foot had done the same and gone numb and she's lost the ability to walk overnight.

We've been to hospital and has another MRI. (Nhs have been superb) but they can't find anything wrong. Consultant said the hardware is fine , the wiring is faulty. They've sent her away to have physio and come back on 3 months.

We're frantically trying to cope. We've bought a wheelchair and borrowed one. Looking into blue badge and radar key. Luckily we have downstairs loo etc.

She can't get back to school as she gets a bus. We live 45 mins from school as she goes to the nearest grammar. We can get her to the bus but don't know how to get her on and off the bus. DH apparenty thinks they have to facilitate her getting on the bus under disability act. I'm not so sure as she doesn't go to her nearest comp. We're just scuppered. She refuses to change school as she has good friends at school. We can't drive her long term as DH and I both work full time. DH often travels away overnight. I can occasionally wfh but not full time. Does anyone have any ideas or help. We have no expertise of disabilities and a bit lost at sea if anyone has any ideas.

It's not public bus. It's a private coach that we pay almost £1000 a year per child for.

@bicyclesaredeathtraps I read once that for instance for fibro or CFS etc, allowing people whatever aids they need was protocol. This is so they stay engaged with normal activities as much as poss. But maybe the guidance is different for kids/young people.

@MrsArchchancellorRidcully Don't take anything you read here as gospel obvs. Get any other tests you want to try and if she gets the all clear, follow your NHS consultant's (or any other consultant who doesn't seem to much of a loose cannon/as fringe as some private ones can be) advice.

If they say physio's the answer, you can always pay for more physio if you have the cash, and take the bit your insurance offered for sure etc- up to the limit your consultant suggests.

I would double check anything a private consultant tells you, with your daughter's NHS team. This is because they can have their own pet thing they're into that's incorrect and could make her worse (I know this from my own bitter experience over an issue.)

Any changes/emotional difficulties in her life ATM?

I would hold off on making the wheelchair a fixture. If it is FND it will get extremely entrenched.

There is a specialist FND inpatient unit in London.

I'm sure the coaches do have to have wheelchair access, some time or another they'll have kids with mobility problems.

It sounds like she's motivated for school etc, which is great.

Just because we can't see a physiological cause doesn't mean there isn't one.
Hence functional MRIs have been shown to pick up abnormalities in the brains of FND patients, they're just not widely available yet.
I don't "believe" that my legs sometimes don't work etc, they just don't. And I can't induce POTS symptoms, which you seem to be implying by saying it's a self-fulfilling prophecy. My blood just isn't getting pumped to my head.

Anyway, I'm going to hide this thread now because it's upsetting, and I don't think this debate is helping OP

My DD aged 15 has episodic ataxia and it causes seizures in the lower half of her body;the seizures cause temporary full or partial lose of function.She gets pain and pins and needles in her back and legs;she has been prescribed epilepsy drugs too (carbamazepine).Ataxia is rare,there's multiple subtypes and there's only a couple hundred of diagnosed child cases in the UK.

@Twentywisteria which unit are you thinking of? GOSH use to have an NHS FND service but that's not accepting any new patients. My understanding is there is no specific paediatric FND inpatient unit in the country (private or NHS). Children may be accepted in pain management teams/neuro-rehab units which sometimes take inpatients.

There is a story currently on The BBC website about a child with Conversion disorder (and it is stated as conversion disorder not FND) who was treated at The Croft in Cambridge, but that's a MH inpatient unit.

The reason it often co-occurs with POTS/ME/fibromyalgia is because they're all diagnoses of exclusion relying on a patient's subjective interpretation of vague physical symptoms like tiredness and diffuse pain, and that they have a prominent psychological component.

Technically you're right, as your daughter doesn't attend the nearest suitable school she may not be eligible for school transport to be provided by the local authority. However, I would suggest you have nothing to lose by applying, as it's just possible the LA will acknowledge that it wouldn't be reasonable to expect her to change schools for what you hope will be a relatively short period, and therefore they may agree to provide transport. Try getting your local councillor on board to support you.

Think it was the Lishman?

Could have closed. Had a patient with FND who sadly developed Munchausen's later on and was severely mentally unwell.

Did she have covid infection or covid vaccination in the weeks prior to the first symptoms? Routine tests reveal nothing.

Oh what nonsense.

did you just call ME symptoms "tiredness" 😂😂😂😂🙄

did you just call ME symptoms "tiredness" 😂😂😂😂🙄

did you just call ME symptoms "tiredness" 😂😂😂😂🙄

Exactly what I though.

My brother had it as a teenager. He had to relearn how to walk.

I know a kid that had similar. Docs said it was their head, as it followed a traumatic experience. They were eventually diagnosed with epilepsy and has now regained full use of their legs but it took a while

I'm so sorry to hear about your dd.
Depending where you are there's a charity service called Dial a ride throught the uk that could really help.

But you Dh is right about the buses, they should all be able to accommodate wheelchair users but you should contact the bus service and the school for advise/help just incase they can offer something we don't know about.
Goodluck and I hope you find answers soon x

POTS is diagnosed by one measurement, once, being over a fairly arbitrary limit. And the symptoms of faintness, feeling dizzy, etc absolutely can be functional rather than physiological. Self fulfilling prophecy doesn't mean you're faking it.

There are no tests for ME or fibromyalgia.

I'm sorry you find this thread upsetting, but encouraging the op to put her daughter in a wheelchair, when actual clinicians have assessed her and diagnosed her with fnd, is not in her best interests.

The school should be able to advise you on all this - have you not asked them? If not the local authority Education Welfare Officer will know you could ring them tomorrow. She'll need extra support in school - ask what they are going to offer her, getting from class to class, lunchtimes etc. Without a diagnosis you could have a fight on your hands.

I've only read all your posts and some other posts OP, but has anyone mentioned SNAP:

www.snapcymru.org/about-us/

I'd be on to them first thing too. This sounds like its going to be a long haul issue. And that's just with the school.

'ME' is called Chronic Fatigue Syndrome nowadays of course, as there's not usually any actual encephalitis involved or indeed often any physical illness.

I understand why you're trying to enable her to continue getting to school, op. I agree that I believe the coach company have a legal duty to be accessible but I have no legal training on which to base this.

It sounds like you might need an advocate, have you had any contact with disability charities? I'd also reach out to local councillors and MP.

Both this sort of attitude, and the "How dare you suggest that POTS might have any psychological component? I'm going to have to lie down at the mere suggestion" (irony KLAXON) are equally unhelpful.

They both rely on a binary interpretation of disease as physical vs psychological, and on an implied hierarchy - physical disease is the 'real' disease, and only physical disease is 'allowed' to have real symptoms. So @OldFan is a twat about ME and the POTS person has an attack of the vapours at the suggestion that her attacks can be affected by conditioning.

This is just all a load of bollocks. Yes, of course, a broken leg is more physical than psychological, and depression is the opposite. But neither of them falls neatly into a purely physical or purely psychological bucket. The person with the broken leg will experience pain differently, depending on a host of psychological factors - even the colour of the box that her painkillers come in. The person with depression will often experience a host of physical symptoms - indigestion, pain etc

This stupid attitude to disease deters so many people from getting the help they need. It stigmatises functional illness - people are ashamed about the diagnosis, and want a 'real' one. FND is real. ME is real. Some of the posters on this thread need to grow the fuck up.

Extreme debilitating fatigue I would say would be the more accurate term

Not 'tiredness'