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.

Oops we can drive her to BUS stop not school.

It’s interesting to me that the diagnosis is not yet confirmed, you are describing an child who is severely restricted in all aspects of their life due to their current presentation and school transport is your primary concern.

Have they completed EMG and nerve conduction studies? Bloods? Has she been seen by neurology, neuropsychiatry or neuropsychology?

There are still many potential diagnostic differentials which need to be explored and I would focus energy on managing this as the first approach. When you know what you are dealing with ensure you get full holistic multi disciplinary management. What speciality physio does she have? General paediatrics is unlikely to be sufficient…

regarding school the SEnCo should be supporting you and supporting adjustments to access education. Whilst she is on their roll call I understand they have a responsibility. Can she toilet independently? Can she access the school environment? Can they still meet her needs? if they can’t meet her needs I would engage support from the local
council to review alternative providers and solutions to accessing education.

given this started pre Christmas you may be entitled to disability living allowance (3 months from presentation).

She should be eligible for PIP/ DLA (I'm not sure which for under 18s), once she has been ill long enough to meet qualifying time criteria. That would help with cost of taxis for instance. The Disability Rights handbook explains all the rules and procedures for applying. Your local council may have a disability rights service who can also advise.

Thanks but we live in n wales so don't know if this applies. Dd goes to school on the Wirral in England.

@Lovestodrinkmilk You are only eligible if you have disability for 3 months and it is expected to last at least another 9 months. That may or may not apply in this case.

@OutofEverything It’s the ‘qualifying school’ from that leaflet that is the killer. That applies whether the child has SEN, a disability or anything else. It’s always worth asking asking insistently though!

Getting the coach company to provide accessible transport is likely to be easiest, you can then approach the council to see if she is eligible for a free bus pass (in our area this officially doesn’t work before 9.30 though!)

@MrsArchchancellorRidcully Sorry I don't know then as she is crossing countries. This helpline run by a charity in the Wirral should know about the rules across countries as she won't be the only one affected.

www.wirralinfobank.co.uk/Services/598/Living-Made-Easy-D

Yes.This happened to me and it was that.

Wont show on MRI

I was going to say the same

But I would also ask the bus company of they can put an accessible bus on your route. Just needs a ramp and suitable space. Nearly all the buses in my City are accessible - hopefully where you are ensuring this will be easy.

I wouldn’t accept any diagnosis of FND Wo any organic cause properly investigated first.

FND is the easy way out when it becomes a bit harder to find out what going in. And when people don’t get better, it’s patient’s fault because they just dint want to get better….

(Not saying it doesn’t happen btw. It does. And it is a proper diagnosis)

Btw, the way your consultant reacted is telling he thinks it’s all in her head/FND hence the physio and come back in 3 months.
Id keep a very close eye on it.

@MyriadOfTravels she has had lots of tests. We don't know, there may be no other tests to do?

FND is a possibility like others have said, you need everything else ruled out first though. My DS had this, he lost the use of his legs too and was in agony, he eventually regained the use after a year. Its really hard.

Honestly. Guillain-Barre

Anyone has chicken pox recently?

I'm so sorry your DD is going through this x

DH has randomly lost the use of his arm, among a couple of other things. Physio did nothing. We got no answers until we saw a neurologist and now we have a plan, it’s already getting better. I hope you get to the bottom of this too ❤️

Contact your consultant and ask if they will refer you to the community occupational therapist (different to a physical therapist). The occupational therapist will work with your DD to develop techniques to manage her new situation e.g. getting herself dressed, washing safely, getting on and off public transport by herself etc. They will also liaise with the school to identify any possible changes that could make the school day more workable for her e.g. manage her tiredness (if she struggles with this) by limiting the number of big room changes / changing the times of certain activities so that those on the same floor occur one after the another, so she's not constantly moving between floors every day. (Does her school have multiple levels and, if so, does it have an elevator?)

It must be very scary for you and your DD. Try to take one day at a time (as impossible as that seems). It is really hard. I think it's good to have a larger goal to work towards (like getting your DD back to full time education), but it's ok to accept that this may happen in small steps, and some steps may take longer than others.

I'd also ask EVERYONE (all hospitals you've been in contact with, your GP, your local authority, the school, charities etc) for a child psychologist. There are incredibly long waiting lists and even if you and your DD feel she doesn't want or need this support right now, get on a list just in case she feels she would like additional support later (you can always decline it if she gets to the top of the list and decides she doesn't need it).

Charities fill in the gaps in the NHS. Ask if the hospital works with a children's charity or can recommend some support for you to look into.

You say you've already bought your own wheelchair, but just in case, there's some info on GOV.UK about obtaining one via the NHS

www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/walking-aids-wheelchairs-and-mobility-scooters/

Check out carers websites like www.carersuk.org/ which may be able to help you with things you haven't thought of yet. (Look into whether your DD may be eligible for the Disability Living Allowance - it could help you with the cost of transport.)

She's had a myriad of nerve impulse tests, bloods everything. She's had 4 MRIs in her legs, spine and brain. All that's come back is slightly deficient in vitamin D. Nothing more.

I am worried about school. It's only just happening so I'm in shock. She's bored stiff and desperate to get back to her friends and school. She said if they ask her to change school, she won't go.

Has Guillain-Barre been even mentioned?

So they haven't got a diagnosis? Or have I missed that? Why do they think physio will work? Could you use your private health care to fund more tests? Or get her seen by a different consultant? Have you had a second opinion? Sorry. Teacher concern here! I know you must be worried sick!

Could be transverse myelitis. It's really rare and I'm not an expert by any means but my mum got it completely out of the blue so might be worth mentioning to doctors.

In practical terms, a small mobility scooter may be an option to give her some more freedom.

Even the NHS website says for someone who cannot move their limbs they should ring 999. Their wishy washy "diagnosis" is unacceptable.

I know you say you considered private for physio, but what about private for a full medical assessment?

Go to a neurologist.

Do not waste time on work arounds.

Pay whatever it costs. Your child needs a diagnosis and treatment.