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.

Can I caution about the advice for private physio. Ask your NHS physio if this would be helpful. Because with some conditions you need a physio working closely with your consultant and who is a specialist in that area. Simply paying private physios can be a waste of money that achieves nothing. I know this from experience.

Why the F is she taking anti-epilepsy medication?

I know of this happening to two people in the last three years, and the common denominator was Covid. NHS will not entertain that diagnosis as being a possibility.

First case was a friend who’s husband woke up one day and his legs didn’t work. No warning or anything. Just no use of his legs. This was early stages of Covid when everything was locked down and Doctors couldn’t see him and they signed him up for physio, and they brought round machines (a stand aid) and locus, drew blood and even had him consult with a psychiatrist in case he has a childhood trauma that the lockdown had in some way triggered. Repressed memories or something. Good news being it took him two years and now he mostly walks okay, but he used to play cricket and he can’t even run to avoid traffic now. My friend had a mild case of Covid in the February and whilst he didn’t appear to have caught it, with hindsight she thinks he may have, and only because they know a very similar case.

There’s a young couple who are very active in the community and they have a 6yo son. During lockdown they did outreach work making sure all the pensioners for their shopping and carrying out welfare checks. Masks and gloves the whole 9 yards. He gets hospitalised with Covid and put on a ventilator, and it’s touch and go for the first 6 weeks if he’s even going to survive, and then it’s physio for 6 months because he’d been kept in a medically induced coma, and his muscles had atrophied, and this is a really fit active guy.

But while all this is going on... his son spontaneously looses the use of his legs. This is a 6yo, and the NHS pull all the stops out, scans, blood tests, everything, and at the end of the day it’s the same diagnosis... no idea what happened but with a lot of intensive physio, they’re working again.

...

So, a cooky thought. Could it be Covid? Of course it’s not like they have the expertise or the ability to test for these things, nor do they even know how the virus works, but your post is just alarming as until 3 years ago it never occurred to me that someone could wake up and find their legs didn’t work.

It will be pregabalin or similar, which has more than one indication.

The last line of your post isn’t the case at all - the local school coach provider here run an old fleet of coaches that simply aren’t accessible.
A lot of schools will use similar companies.

What the fuck are you talking about? Having epilepsy doesn't magically make you an expert on all drugs that can be given for epilepsy. If you actually were an expert, you'd know that there are a whole range of drugs - from benzodiazepines to gabapentinoids - that are used for epilepsy but also have other indications.

JfC. So, basically, there is no evidence whatsoever that your friend's husband's symptoms or the child's were actually caused by Covid. And the bloke on ITU had atrophied muscles from being on a ventilator, which is nothing whatsoever to do with Covid - it happens to everyone who's bed-bound for a while.

But, on the strength of 2 cases of people with leg symptoms who didn't have Covid, and 1 whose leg symptoms weren't caused by Covid, you have diagnosed the OP's DD with Covid. Brilliant. Have you considered medical school, because you're a real loss to epidemiology?

@GreenFingersWouldBeHandy Quite often they give anti convulsant meds for a wide range of conditions involving nerve pain. Or I take a med that's usually an epilepsy med for my bipolar.

And 'start taking' could include titration- after all, that's still starting taking a thing, just at a lower dose.

I’m so sorry you’re going through this. Sudden loss of feeling and / or use of legs is not entirely uncommon in Long Covid and can happen months after an acute infection. The Long Covid Kids charity has a ton of resources if you think it might be a possibility.

You really need to use your private insurance now for tests and follow up.

Timing is really key here. At the moment it’s an acute case. If you leave it longer, it will be deemed chronic and you won’t have that option open to you.

No.

We have a wife who had Covid who’s husband lost the use of his legs at the same time. He is not a child. The NHS were very much in the we know nothing about Covid stage. In our area they locked everything down and cancelled all services. Including home visits and physio, and 3 months later they start him on physio.

We have a father who has Covid and almost died. Induced coma and ventilator the whole lot. At he same time his 6yo son loses the use of his legs. Seeing as it’s a year later and the NHS have been reading some books, and began providing services to patients again, they take the child’s case seriously, do a whole battery of tests and figure out nothing, which appears to be the standard response to spontaneous leg dysfunction judging by OPs story.

So, yes. Two cases where one member of the family contracts Covid and the other loses the use of their legs, spontaneously and with no warning. I dare to speculate that at the very least, when the £180Billions NHS machine can find absolutely no reason or diagnosis for this phenomenon, that maybe one should explore the possibility of a link between a new unknown virus and a new unknown muscle or nerve failure I the legs.

But you are right @MissLucyEyelesbarrow . I completely missed the bit where OP stated that her daughter had not come into contact with anyone who was carrying the novel corona virus, and was wrong to suggest that it in any way may be similar to the cases I am aware of. In both instance that I am aware of (that are not in any way similar to what OP is dealing with), those affected regains the majority of the function of their legs, the man within 2 years and the boy in 6 months or so.

Let us all hope OPs daughter a swift recovery, and let us all hope the NHS manages to figure out how to diagnose people so that other like OP get the care and professionalism they should have a right to expect from NHS staff.

Wait. Why are we talking about Covid when according to @MissLucyEyelesbarrow its outrageous to draw any link between Covid and spontaneous loss of motor function in the legs? Is @MissLucyEyelesbarrow just trying to wind everyone up? Do we have an anger problem judging by her tone?

What did the LA say? The local authority? You could ring both. What did her present school say when you explained the issue? The LA will have many children who need transporting for one reason or another so there will be standard procedures which follow national and local authority guidance. Crossing from wales to England may or may not be an issue, best to establish what the situation is first before worrying.

In the first instance they didn’t test the guy for Covid, because he was bed bound at home and they had no tests outside of a laboratory. At that stage the medical establishment were running scared and playing their containment thing, and as he posed no risk to the public, because he couldn’t move, he was not a rush to outside world. So they left him bed bound for three months until the locums began working again, and the NHS restarted their physio departments back up. It was very much don’t phone us unless you’re dying and need an ambulance. We can’t provide you with care because of Covid. You can’t walk, that’s your problem, stay chipper and hope for the best.

In regard to the second family, the whole family were diagnosed with having had Covid in their system at one point and the father almost died so I think we can safely say he had Covid.

And to your last point, if this is the extent of the ability of the NHS, it doesn’t seem too difficult to me, because from what I’ve seen, they are just pissing money up a wall, and if you waste that much money on diagnosis with no appreciable results, it goes some way to explain the funding gap for pay.

OP

I'd contact the council re transport.

The fact she is 14 and has been at the same school, presumably, since she was 11, will factor in. Also you are paying for transport, the links upthread are for free transport.

Your husband is right that the bus company need to make 'reasonable adjustments'.

There are other options, in some cases school teachers / support workers have insurance to transport pupils in their cars.

When I did my PGCE one week was at a school for children with learning disabilities, one of the buses didn't turn up one day, but all staff were insured to drive children home.

disability as described in law www.gmc-uk.org/education/standards-guidance-and-curricula/guidance/welcomed-and-valued/health-and-disability-in-medicine/who-is-a-disabled-person

however there are lots of children who struggle to attend school due to short term illness/hospitalisation so best ask the LA for advice on procedures. I suspect the school should be providing work or online learning or the LA sending tutors as a temporary measure.

GB isn't gradual over three months, weeks at most and usually quicker than that, so that would be very unlikely, more likely to be a working diagnosis of FND- has she been referred to any psych specialists as that's usual in conjunction with neuro if they are querying FND. Can you talk with the school about what provisions can be made? I'd assume there would be a process to apply, but with medical reports they should be able to provide something surely. I really hope you get some real answers soon.

Have they checked her B12 levels? Could she have EDS or Marie Charcot Tooth syndrome? I would ask for a referral to a rheumatologist, they can diagnose both, she is very young for those symptoms & no diagnosis.

Ds has similar symptoms plus extra flexible limbs & stretchy skin, he was diagnosed with EDS, it can be hereditary, I'm going through the same diagnosis as I lost the feeling in both feet, legs & fingertips & was born with dislocated hips.

Im sorry to add another possibility here but just in case. My 16 year old son has lost the use of his legs suddenly twice. He needed a wheelchair both times but gradually regained the use of his legs in a matter of weeks. Turns out it was myositis where after a viral infection the virus settles in the muscles of the legs. There was no treatment apart from waiting it out and it remedied itself.

I was going to say exactly the same thing. These are the known complications of the HPV vaccination for example. But I’ve heard there are more. 111.wales.nhs.uk/LiveWell/Vaccinations/HPVsideeffects/

I am very susceptible to long term issues from prescription meds. I was stupid enough to have the covid jab, which set me back years in recovery terms. My troubles first started when taking the pill for ivf 16 years ago. I am disabled, have chronic fatigue, chronic pain, fibromyalgia, not much of a life really.

I am very sorry to hear of such a difficult situation. I appreciate your focus is to get her back to school asap, but that is one side of things, I would not be happy with the medical side. You say Alder Hey have assessed her. Is she still under the Consultant? You say nhs have been brilliant, but have they? You didn't actually mention any specific diagnosis. Is this because Consultant hasn't/doesn't want to diagnose? FND hasn't actually been diagnosed yet, has it? Would you be happy if it was?

Just jumping on to say something similar happened to girl my dd goes to school with. I don’t think she had the pins and needles thing, but just lost ability to use her legs. It comes and goes in severity. Like your DD many tests and scans which came back clear. Eventually, she
was diagnosed with FND – functional neurological disorder. She was also 14 when it started, also using a wheelchair. Sorry I don’t have much more detail I don’t know them very well. I hope you get some clear answers soon and your dd starts to get better.

3 months of physio will be part of her investigations. They will do various outcome measures which will measure muscle strength etc at the beginning and end of 3 months to see if it is helping. This will help the neurologist make a final diagnosis. Unfortunately lots of neurological conditions are a process of elimination.
If she does have FND please remember that this is not her fault and it is not a conscious decision she is making. The book by Suzanne someone 'it's all in your head' is excellent and worth a read.
Has your dd got an OT? If not I suggest you push for one, ideally one who specialises in neuro conditions. I believe the Walton centre is your nearest FND specialist centre, although I may be wrong there and I'm not sure if they accept children.