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.

Wouldn’t she be eligible for transport - an adapted taxi?
It’s possible that she might go temporarily to a school that deals with physical disabilities - in my city there is one attached to the children’s hospital and children who can’t manage at their normal school due to injury/ post-op needs/ a site without lifts etc will go there for a while. Contact the SENCO at your school to ask about the local offer.

Consultant said the hardware is fine , the wiring is faulty. They've sent her away to have physio and come back on 3 months. - so the wiring is faulty, so what are they doing about it?

Ask to see a neurologist.

Have they checked for Guillain-Barré syndrome?

Oh my god WHAT have I just read???? They sent her away with “faulty wiring” and now she can’t walk? I would be battering down the door of every specialist in the UK

Could it be functional neurological disorder (FND)? There have been other cases similar to this. My daughter was diagnosed with it during the second lockdown when she developed Tourette's type ticks. Although it's horrible when it's happening, it can go as quickly as it comes. They thought it was brought on by stress for my daughter. It lasted about 9 months and she's absolutely fine now. Really hope she's ok xx

I was going to mention FND. It can happen if the body/person feels under threat and just shuts down.

www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder

Some people find that “body reprogramming” (basically a cross between CBT and physio) can help.

www.plymouthhospitals.nhs.uk/body-reprogramming

That sounds horrendous 😥

What are her Vit b and d levels in her bloodwork? Vit Bs help with the nervous system. I get terrible numbness with stabbing pains when mine are low.

Does the bus not have a ramp and wheelchair space? DS gets to school in his wheelchair using the school bus. It has a ramp so he wheels himself on/off. While he has an EHCP using a wheelchair at school was unexpected and is still new. Wheeling is hard work so we take to the bus stop and meet at the end of the day. Some lessons are on zoom at school where room use can’t be changed to allow wheelchair access. The bus company may be able to change the bus to a wheelchair accessible one if it’s not already. Ours was very helpful and always send an accessible bus on his route even if other routes to school don’t have them.

As far as the bus is concerned, does she have friends getting the same bus?

My dd had a major hip operation a couple of years ago and wasn't allowed to bear any weight on one leg for a few months. At first, she was mostly confined to a wheelchair

She had chosen to go to a secondary school that was 7 miles away, in the next town.
I used to take her to the bus stop which one of her friends used and wait with her for the friend to arrive.

Her friend pushed dd (in her wheelchair) onto the bus. More friends got onto the bus later on. It was a bit of a trek from the bus stop at the other end so a few friends would take in turns to push dd from the bus stop to school.

First thought is guillain barre

School should be able to advise re transport/support. It’s not safe for her to travel without a proper plan in place. I’d not worry about school in the short term though as this is a huge thing for you all to deal with. I hope you get better support and help soon.

DS’s wheelchair use is caused by complex regional pain syndrome, basically the same thing, the hardware is fine but the wiring is faulty. It’s been nearly a year now and much improved, ie he can walk for a short time but not back to normal yet.

There is no requirement on the Local Authority to provide transport as she is at a school that is not her most local one, even if it was the most a local one it would have to be over 3 miles for her to be eligible for transport.
Sometimes we pay for taxis, (similar distance from school, 40/45 mins) easier now that he’s progressed to the point that the wheelchair doesn’t have to come
home any night when he’s only going to be at home. It’s hard though and had a massive impact on both our works, I’ve dropped down to 4 days, DH works from home more than is ideal.

Has the psychological aspect been explored? Could your consultant refer you to a child clinical psychologist

You need to contact SEN transport in your borough/county to try to sort a taxi or adapted bus (if she's ready to be back at school). The school SENCO may not have dealt with them before.

I hope you are all feeling ok. Must be an enormous shock. Hopefully things will improve

It doesn't sound like Guillain Barre syndrome, given the timescale and progress. It does sound functional, but I would be worried about no review for 3 months at this stage.

Also I don't know whether she would be eligible for transport etc as her condition may not meet the criteria?

Can you go private?

@TheYearOfSmallThings
I agree, 3 months is a long time to let things get entrenched, although it’s good she’s seeing physio.

With Complex Regional Syndrome the pain is acute. Is she in acute pain?

@DaisyDays123 There is zero evidence there is any issue with the treatment, OP says the NHS has been brilliant. This is an issue with getting to and from school.

@MrsArchchancellorRidcully If you are in England this sheet explains about school transport and eligibilities.

contact.org.uk/wp-content/uploads/2021/03/home_to_school_transport.pdf

Basically you are entitled to suitable school transport that meets your childs needs.

You need to contact the school SENDCO and the local authority ASAP to find out how the school can make provision for her. The poster who said that the LA aren't required to provide transport, I think it might be different if there is an SEND or physical need. Also ring your gp and ask for a referral to an occupational therapist who can advise and get equipment to adapt your house and help keep her as independent as possible.

Thanks all. It's reassuring to know some parents have options.

We can drive her to school no problem. DH is self employed I work mainly from home but we can't drive her to school and back long term. It's not her nearest school. We live in n wales and she goes to grammar in England.

If it helps Alder Hey have assessed her and she's being given physio to see if there's an improvement in the next 3 months.

Through my job I have private healthcare but haven't needed it. They okd 10 sessions of physio but nhs came though so quick we haven't had to use it.

We're coping and so is Dd. She's been prescribed strong anti epilepsy drugs which side effect of dimming nerve pain. But they make her v tired though. School keen to get her back as they get quite a lot for kids over from wales. We pay £148 per month for the bus already. DH thinks coach company have to have wheelchair accessible transport. That plus pip could pay for the extra?

I'm currently getting through the pino tonight DH is a rock. I'm so lucky to have him. You guys are supportive and I appreciate that. ❤️

Sorry I would not be happy with that. I would be looking to find a paediatric neurologist for a second opinion and if you can’t do that on the NHS then somehow pay for a private appt, you can take the MRI with you.