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.

So sorry. So pleased that there are people with advice on here. Have you got a good GP who you could discuss the options given by them.

Sadly GP isn't great. The consultant we're seeing locally has been superb and she listens to us and we can email her and Dd is seeing her next week and DH will talk to her.

She's also been asked to go to Bangor hospital as they are having a new MRI like machine over from the Netherlands and have asked for Dd to come in and they use it to train other consultants on unusual cases (their words) so we have hope they might find something new.

I’m really glad they are still investigating and you have a great consultant!

Btw, I’m very glad she has a wheelchair.
No one would say to someone not to have glasses and to make as little fuss as possible. You just people glasses.
Its no different for a wheelchair.

Forcing someone to move on their hands and knees and stopping them from getting an education has also never helped MH issues so why punishing someone IF they have FND is beyond me tbh. We would never accept that sort if talk for depression etc…

That's not a good analogy.

Someone with a visual defect needs glasses. Giving them glasses is not going to make their visual problems worse.

The tricky thing with functional disorders (and I know that's not a definite diagnosis in this case) is that well-meaning attempts to help can unfortunately make the patient worse, by subconsciously reinforcing the functional problem. Parents are typically the worst 'offenders' because they naturally to want to support their DC as much as possible. Unfortunately this can delay or even permanently prevent recovery in some cases.

If it does turn out to be FND, I really hope that the OP gets advice from a specialist physio and OT.

This happened to a friends daughter she was also dismissed by the NHS. They paid privately for a physio. Physio diagnosed a condition and she was walking again within a month. Please don’t just accept the NHS diagnosis they don’t always get it right and funds are severely lacking for diagnostics.

Under the new flexibLe working acts/bills being passed your employer should be able to alter to start/finish times due to the change of circumferences. I'd explain the situation to your supervisor/HR dept.
Surely if they have any compassion they will accommodate

There seems to be a really bad view of FND on this post. From my own experience of it and speaking to others who have been diagnosed with it the nhs use it as an umbrella diagnosis because they haven't been able to identify a cause that doesn't mean there isn't one.

I'm glad I'm one of the people who got to the bottom of what was actually wrong with me.

Poster you seem very level headed and are taking the advice of medical professionals which is the right thing to do as they know your daughter.

Hopefully they arrange genetic testing to eliminate this.

For the dla I would get a benefits advisor to help you fill it out.

we know so little about neurology, why does it surprise people that problems cant be found and identified.

Those of you harping on about a positive attitude and managing without disability aids is the way forward, are just as ignorant, and just as guilty of jumping on a trendy, fashionable band wagon as those people in the past who clamoured for epilepsy to be cured by casting out of demons

Op, I really feel for your daughter. Keep pushing for transport to school.

There seems to be a really bad view of FND on this post. From my own experience of it and speaking to others who have been diagnosed with it the nhs use it as an umbrella diagnosis because they haven't been able to identify a cause that doesn't mean there isn't one.

The honest answer on that is that yes I have a very bad view of FND. And that’s for the reason you describe. It’s used for stuff they dint understand. And away out to stop trying.

The problem is that, once you have that diagnosis, looking fur the reason of your symptoms stops.
The way you get treated once you have that is often appalling - with any other symptom you develop automatically linked to FND and not investigated.
All because ‘there is no organic reason for your symptoms. Just go and CBT’ and the idea it’s all in the person’s head (see also the idea women are hysterical etc….).

My comment wasn't directed at you. I can understand someone who has been diagnosed ( often wrongly) having a negative view of the condition.

What I don't understand is the negative views of the people on this post saying parents enable their child to be more disabled by allowing them to use aids etc. I'm not saying that their aren't people with mental health issues that do view these things in a way that they will get more help etc. in fact I use to work with a woman who openly admitted to lying her way through an autism assessment using info from Google to get the adaptions she wanted at work.

The parents I know would only use aids after being recommended them by a professional not just going and getting things themselves

FND is a diagnosis of exclusion. It is a real diagnosis though. The OP says the Drs are not looking at FND for her DC though.
Some Drs do diagnose FND too quickly. But I have known two people with FND whose legs both stopped working after a traumatic experience. One after a gang rape and another after a physical attack. They needed the correct diagnosis of FND to get the correct treatment. And both walked again.

And it's comments like this that show how unhelpful this forums like this can be!

In paediatrics they don’t actually like to diagnose FND. You get analogies of incorrect software not hardware (like OP has been told). We were told it was not helpful to tell our child they had FND, as “labels were unhelpful”., but “it would be FND”. He only got an official diagnosis on a piece of paper (and we were told not to tell him) because school wouldn’t have them back because the insurers couldn’t cover a child without a diagnosis. We were told to tell our son that it was a software problem and we just needed to retrain his brain.

im not saying it’s the right or wrong way to do it, but just that’s what we were told.

In paediatrics FND is very much psychological/psychiatric led and it’s an unmet need. I saw the psychiatrist who saw my son from GOSH on Twitter recently saying that FND, conversion disorder, medically unexplained symptoms and permanent physical symptoms were all the same thing. Again not saying right or wrong, but this is the opinion in paediatric FND cases.

I think lots of people do not understand that the same drug can have multiple uses. I have had a cancer drug by IV but I have never had cancer. Most drugs have multiple uses.

I think, from memory, the evidence is that Psychological support is the most effective treatment there is currently for FND. This is not the same as saying ‘it’s all in the head’ or we need to take wheelchairs away etc.

It is @Sindonym when it's actually FND... And that's the POTENTIAL issue here

And I fully agree (see one of my previous posts), taking away a wheelchair is not helpful. But rather a a 'sink or swin' approach to healthcare and MH that is crap and shocking tbh.

@MyriadOfTravels The poster who said that has a sibling with FND who has never recovered. She did not think the approach her parents took helped and thinks that approach would have helped. She may be right or wrong, but she does not come from an unsympathetic viewpoint. She was keen to ensure OPs DC recovered unlike her sibling.

I have an adult cousin who had FND. She never recovered use of her legs and developed medical issues that led to her early death. I know how devastating her death was and so understand why someone close to this would want to stop it happening to someone else. Lots of people with FND do recover though.

Gatecrashing (Sorry OP, you've had lots of helpful people here.)

Can anyone who can help direct me to medical help for FND please see www.mumsnet.com/talk/childrens_health/4750134-accessing-help-for-fnd

Jesus! How many able body morons are there on mumsnet?! This is some ablist nonsense.
Of course you buy her a bloody wheelchair her and equally you and your family Quality of life is what matters.

I wonder how many of them would stick to this weird idea if it meant they can't drive in fear theyd forget how to move their legs to walk...because its the same stupid logic, in fact, more so- we travel 10s/ 1000s of miles in a car, yet somehow we still know how to walk to the fecking toilet.

Buy every mobility aid available that you can afford and she wants. You can get light up walking sticks now.

If she's a big outdoor person, you might want to look in to all terrain wheel chairs, more expensive but they look fun as hell.
www.mountaintrike.com/products/etrike

Keswick 1967, how was neurology at Oxford? My 14 year old daughter has an appointment there in August for FND symptoms- no sensation in left foot, sees double, absence seizures.

Hi. Any update on your daugher? My situation is similar. My 14 year old daughter has a range of complex health issues, including POTS, hypermobility (joints dislocate), torticollis, FND is suspected, no sensation in left foot, double vision, absence seizures. A lot of the neurological symptoms started in May, after she fell down the stairs. Seeing a neurologist in August at Oxford. She sees a neuromuscular chiropractor and starting NHS physio soon. She is an ambulant wheelchair user. Her attendance at school has been 40% this year and around 5% for last few months. She would like to repeat Year 9 in September, as she is academic and wants to get excellent GCSE grades, but her school have said no as they say the current Yr 8 classes are at full capacity. They are also concerned that the school is not accessible for wheelchairs (lots of stairs etc). The EHCP won't be in place until November.

Oxford are very thorough at all the appointments, my daughter was originally at Sheffield Childrens Hospital until she turned 16 and transferred to Oxford only thing for us is it’s 3 hours away but we only go once a year for check ups. Any problems though we can either ring or email which we have done and they get straight back to you.

That's great to hear. I really hope they help my daugher and her paralysis comes back. She is going to see Dr Jayawant at The JR in August.

OP has anyone mentioned Lyme’s disease ?