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.

Just a small practical point as you mentioned a radar key - you can buy them on eBay, I’ve done so for my Dad who is disabled.
I hope you get some answers and solutions soon for your DD

www.neurosymptoms.org/en/symptoms/fnd-symptoms/functional-limb-weakness/

Has she had any vaccinations lately, my daughter was diagnosed with ADEM, after having the flu vaccine, it triggered paralysis and affected her eyesight, she is under neurology in Oxford, luckily she is no longer paralysed.

Another poster saying it could potentially be FND but this should only be considered after an assessment by a neurologist and other causes have been excluded.

Sounds like they have done all the necessary tests to exclude other causes?

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.

SUZANNE O'SULLIVAN is a neurologist with a special interest in physical complaints that have no medical cause: sufferers have seizures, but brain scans show no indication of epilepsy; they have disabling symptomsincluding paralysis, coma, blindness, persistent headaches, rashes, chest pain and tremorsbut every medical measure from blood tests to MRIs shows nothing amiss. "The stagnation of scientific progress in the field of psychosomatic disorders left lots of room for a mystery narrative to develop", she writes. "How is it possible for someone to fall into a coma when their brain seems perfectly healthy? What causes the leg paralysis of a psychosomatic disorder if the nerve pathways are all intact? How does that ethereal thing, referred to as 'the mind', cause seizures?"

go.gale.com/ps/i.do?id=GALE%7CA667422540&sid=googleScholar&v=2.1&it=r&linkaccess=abs&issn=0307661X&p=LitRC&sw=w&userGroupName=anon%7E28e892a5

When they say faulty wiring they generally means the hardware (brain, nerves etc) is ok but the software is “faulty” eg our body is usually manifesting in a physical way something that is affecting us psychologically. It means there is no organic cause to the symptoms but usually something psychological. It’s important to understand that this is NOT made up and the person will genuinely experience their disability. It’s just that the cause is different and the treatment is therefore different. Sadly it also means that there is less urgency with referrals for treatment and people often have to fight more for the right support.

Have they done a lymes disease test? It can be tricky to diagnose but can cause neurological issues including loss of movement in arms and legs.

You don't always get a bullseye rash with lymes and it takes a while to settle in

We see the neurology team at Alder Hey - they're amazing. I would be hankering to go private and just get seen and get the relevant tests done.

I'm not sure about the transport as others have mentioned. Presume you're at Wirral Grammar (or maybe West Kirby Grammar) and I simply can't see the north wales councils paying for transport to there as it's a choice to go to those grammar schools (did you move after getting in? Always thought they were quite strict on catchment)I'd be contacted some taxi companies direct and asking for a bulk discount for daily travel.

That depends which LA you come under. Mine would pay for a disability that occurred after starting the school even if it wasn't the nearest etc.

Has she got an EHCP?

This will provide her with transport to and from school.

I only have experience with children with SN or MH issues too and not just physical disabilities but I would assume they’re treated very similar.

Many of our students have schools way closer to them but they’re still able to get a taxi.

I don’t know how it works with being in Wales and going to England.

We live in Kent and I know here there is only help with transport to school if you go to your nearest school.
The nearest grammar does not count, nor does your preference
No idea if all councils are the same but it would be wise to check out your local area online

Was she HPV vaccinated or covid vaccinated?
If they have found nothing and she’s been recently vaccinated before her illness started, she may potentially have a vaccine injury.

Ask to see a neurologist and look up Guillaine Barré Syndrome.

Please don’t read this post and think verbena is cuckoo - the Uk government pay up to £120k for vaccine injuries because they do happen and pharmaceutical companies bear no liability in many instances and zero liability for covid vaccine injury.

Whatever it turns out to be, young people of 14 don’t suddenly lose their ability to walk for no reason. I’m assuming they’ve ruled out infected hip and Perthes disease?

Im so sorry your family and your DD is going through this.

The statutory walking distance isn’t relevant when the reason for the transport is SEN or disability.

If the diagnosis is that this is psychosomatic, I recommend finding a really good clinical psychologist, privately if you can afford it. Psychosomatic illnesses can be cured, and addressing the problem early will stop an additional pile of stress from the effects of the illness. Don't just assume that psychosomatic means nothing can be done.

PP above recommended Dr Maria Kinali as a paediatric neurologist, I second that, she has been fabulous with DD. We have an epilepsy diagnosis and the medication for that makes DD struggle.

100% this.

This is absolutely correct.

Op, your daughter needs to see a neurologist and psychologist who understand functional neurologic disorder.

It is very scary for you all, but ultimately it is good news that there is no physiological cause for this. It doesn't mean she's faking it, but it does mean that it's curable with the right support.

Can you do a reccy on the bus one morning (without going to school) both of you go thru the process so you know what to do and how it works
Poor girl hope they find what's wrong and can fix it 💐

Hi Op

Have they tested for auto immune diseases?

Lupus and Sjogren's Syndrome can cause mobility issues by the immune system attacking the nervous system.

As regards the bus. Contact the council regarding school transport. (For us it is the public transport unit). They should be able to tell you what help is available. As mentioned above, your daughter will need help in school. They need to sort out the logistics of her day to day needs & getting around.

Wishing her & you the best of luck.

one of my school friends was completely unable to use her right (dominant) hand during our final year (Ireland so final year mattered a lot). It was absolutely real - she was not faking it - but it was rooted in trauma and dealing with that trauma alleviated the symptom.

Yes, exactly. The book I recommended earlier (the sleeping beauties, not princesses) is absolutely brilliant at explaining this. I have given copies to a few people.

Has your DD been seen by a neurologist ?
If not she needs to be referred.

Nerve conduction test should be carried out.

If I was told “ the wiring is faulty”, I would want to know why.
Dont just accept it.

As you have private healthcare I would ask for a second opinion privately from a neurologist.

Is there any chance of one of you reducing working hours so you can transport her to and from school. I'm not sure how comfortable I would be with a child of that age, a new wheelchair user navigating public transport. I've only been in my chair 2 years and I don't know if I could cope with that.

What are her vitamin B12 and Folate levels?