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.

Hollow laughter at all the people saying omg how can they just leave her like that. I have a diagnosis of FND, only by seeing a private neurologist bc NHS waiting list is years. No NHS treatment pathway, nobody in my nhs trust will treat me - when I've been referred I just get a letter back saying "we don't treat FND".
There's loads of us. It's shit. The problem is that many health professionals still view it as next door to hysteria.

For support though OP I'd recommend the FND Hope UK charity, they have support groups and so on, they've really helped me. Even if it's not FND (and I agree, get her more tests, blood tests for autoimmune, B12 etc first), parents in the parent support groups might have some ideas to help with your situation.

SNAP Cymru will be able to help with school transport questions. They provide a similar service to what IPSEA or for England

If DD can’t attend school the LA must provide alternative provision. Email the LA requesting this provision under s.19 of the Education Act 1996.

Have DD had a home OT assessment? Also ask for a referral to wheelchair services. I know you have a wheelchair but they can make sure DD has the right one and then you are also in the system.

I would contact the bus company a lot of them have wheelchair friendly buses these days. They just might not use one on your daughters route ! Do you have any community transport in your area as they are cheaper than taxis as non profit. Hope she recovers soon.

Sorry just seen your update as to the tests she's already had. Sounds very similar to my experience, only thing that shows is the vitamin D. Do ask for a Lyme test if she's not had that, as well.
Some coaches are wheelchair accessible, I'm guessing it's a school coach rather than a service bus? The company ought to be able to send a wheelchair accessible coach, but you might have to argue with them.

The school should provide a disability taxi to take her to school. It is difficult as you need to be claiming disability living allowance for her and that's slow and difficult to get if you don't have a definitive diagnosis. Contact IPSEA to see if they can advise.

Screen for coeliac, it causes neuro symptoms in many cases but doctors aren't sharp on looking for this.

Do not move schools- she has enough to cope with already! She should be eligible for school transport- usually a minibus service with an escort to help children on and off in wheelchair etc.

Luckily it sounds like they think it will be temporary!

How terrible for your daughter and yourselves. I was wondering if it could be Cauda Equina Syndrome? I'm guessing that has been ruled out?? I don't much about it but I do know that it comes on suddenly and can cause weakness and numbness in the legs. I hope and pray you get this ''faulty wiring '' problem sorted asap. Please go private if there is any possible way. Waiting for 3 months is not right whatsoever - especially in a child x

Regarding school transport your DD should be eligible for an adapted taxi.

Regarding her back, she needs to see a neurologist, I have spine issues, where my left leg is numb, plus nerve pain. I've got issues with the disks, bones and my sciatic nerve. It's good the MRI's are clear however due to her symptoms I'd push for a 2nd opinion from a neurologist.

I don't want to scare you, but have you been told about caudia equina? So if your DD loses control of her bladder or bowels that she needs to go to A&E straight away.

I'm hoping this will help OP. This site details the law around the provision of school transport by Local Authorities, and when they have an obligation to do so.

I certainly think in your daughter's case it's worth speaking to your LA.

Best of luck, and hope she is on the mend very soon. 💐

Try and talk to your home local authority's medical needs coordinator OP about transport. If she's started GCSEs especially they may be able to offer some support to keep her attending regularly.
Wishing her the very best outcome

Lyme’s disease is worth thinking about too OP.

Yes, I thought this too.
I strongly recommend The Sleeping Princesses by Suzanne o'sullivan

Hi OP, I’m a clinician. It does sound like your dd’s consultant has diagnosed FND. It’s a diagnosis of elimination and it sounds like all tests have been done. The good thing is it is treatable but does need a good neuro physio and also psychology support- in my experience this is essential. Some areas have specialist teams for FND so I would ask the consultant and push for onward referral.

I see lots of posters have mentioned guillain-barre syndrome. I have a lot of experience with this and FND and honestly it doesn’t sound like GBS.

www.neurosymptoms.org/en/ this is a brilliant website with lots of FND info.

I wish you and your dd the best of luck with her recovery.

contact flintshire school transport (or what ever north wales county you’re in- I’ve just guessed Flintshire as closest to Wirral). Speak to them about possible transport options. I don’t know how it works with her not attending the local comp but they may have more info

You've probably been checked for this already? but my friend's son lost the use of his legs temporarily when he was about 9. It was frightening, but was a virus that went away by itself after about a week. He has been totally fine since.

Get onto the school and find out if you need to apply for ehcp or the similar under the Welsh system. This would give stat right for transport etc

I follow a lady on insta called lisamarieharris_ that's had similar happen. She's got a faulty gene

If I was you I'd ask for a copy of the bloods done to make sure everything has been checked. If she's got low vit d I'd bet she's got low others. You need to be looking at what the optimal figures should be not what the nhs minimum amounts are as these vary massively.

Has tethered cord been considered? Can show up in teens due to rapid growth and doesn’t always show on an MRI. Needs rapid treatment. Sorry if it has already been considered and ruled out. Shrimps sounds like she would know more about this.

If you did want to see someone privately I can recommend an excellent, very thorough paediatric neurologist (London based) Dr Maria Kinali.

Hi OP. I recently read listened to an audiobook which was the autobiography of Jay Jayamohan who is a paediatrician neurosurgeon based in Oxford. He sounded lovely and there were a couple of cases he described where children had lost the use of their legs. If you do decide to get a second opinion he sounded really caring. I just googled it and he has a private practice at The Nuffield. I remember thinking when I was listening to it, that if my daughter had a neurological problem, I would want him to treat her. x

You don't really know what the long term situation will look like so I'd not think too much about long term just yet. Have you made it known at work what you're dealing with? I'd be looking to take carer's leave and/or sign off sick with stress to sort out the immediate next steps. Let some trusted friends know as well - people are always willing to help when they know that their friends are in a difficult situation. You just don't know, there may be a friend of a friend who's a doctor etc.

Yes, you have private health so you can get other opinions?

I think you need to find the cause and if you have private cover jump onto that straight away. My first thought was AFM but I think you’d have seen other signs by now. Guillan- Barre ? I really wouldn’t wait 3 months.

I’m very sorry for your situation.
If I understood correctly, you have private insurance ? If so, use it. No doctor is immune from errors of diagnosis and PP is right that it’s mostly a diagnosis of elimination. Try all you can re specialists (I’m not saying you’re not, the NHS does seem to be attentive, but if you have the insurance, use it in every aspect.
If I may, I would try not to frame it to her too much as new hopes, maybe more check ups. It’s a horrible thing to go through for you, wishing you a lot of strength (I’ve been through the endless tests following a heart issue after ICU last year)

Not sure whether anyone upthread has mentioned this but transport is only one concern - how will she get around the school buildings safely, use the toilet, science labs or other facilities? Will support be provided? Are adaptations eg powered doors to classrooms needed? This will take time to put in place, I assume. I only have limited experience of this from work and not school so more knowledgeable people can advise.