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.

Thanks for the replies. Just a qn. Those saying don't get her a wheelchair or any mobility aids In that case how is she supposed to physically get around. She currently slides round the house on her bottom. She has no independence at all. DH is brilliant but he is struggling to carry her from house to car and then she can't do anything. She's got her gcse option evening coming up. We want to take her. What is she supposed to do. Slide around the school on her bum?

As to the school. It's had girls in wheelchairs before. Full disabled toilet, lift etc.

And as to seeing a specialist, we're lucky that we've seen the top neurologist at alder hey and we're seeing a consultant neurologist at Bangor hospital. Apparently n wales has some of the country's best neurologists. Who knew!

@MrsArchchancellorRidcully so I was one of the posters who was told not to get a wheelchair (this was neurologist and psychiatrist at GOSH ). So yes to sliding on bottom round home. I was told let them crawl/bum shuffle (and don’t make an issue of it), and encourage them to do as much as they can (so don’t let them lie in bed. Up every day and dressed (and they need to get themselves dressed£). I literally have stood at the bottom of stairs while my child struggled up on their bum, being very calm and then crying once they were in bed cause I felt so awful.

GOSH has a information leaflet on their website for FND so you can look at that and see their recommendations.

That’s why I suggested focusing on physio to see if you can get her back using crutches fairly quickly.

But do speak to her neurologist (see if you can email Secretary), but just be prepared that’s what I was told. When I was saying, “well how do we get them into school?” It was very much they need to get to school and that should be your first target, but they don’t do it in a wheelchair. That’s when we got the private physio in each day and after 2 weeks my child could mobilise slowly on crutches.

As I say I wish you the best, it has been utterly draining mentally and physically having a child with FND. I think what makes it harder is so much is placed on you, that “you need to manage their stress”, “you mustn’t do that”. The inference being it’s ultimately your management that will either mean your child gets better or not.

www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/functional-symptoms/

OP here’s the link. They also have a link to an FND website developed by Jon Stone.

Because she had extreme pain in her legs and back. They prescribed it because a side effect is damping down nerve pain. It's already helped her move her hands which had become stiff. Prescribed by a consultant is good enough for me.

because some anti-epilepsy medication also work on nerve pain and chronic pain. They are widely used for this and have been for at least 20 years.

I don’t think you’re being agressive enough about trying to get to the bottom of this I’m afraid and it doesn’t sound like the NHS have been all that great. Not all consultants are the same and by virtue of him being a consultant doesn’t make him the best person,

Firstly, have you told the consultant you have private health? This is imprtant because it then opens up options such as more intense and regular physio / OT etc than the NHS will offer. It’s also possible that it may give you other drug options.

Then you need a second opinion. You will need to do some digging and there will be consultants who specialise in this area. You need to dig into their areas of speciality and see them. My starting points would be those who work at great ormond street and the Evalina. Look on the Portland website, they list all their paediatricians and their specialities: look for a paediatric neurologist who has their NHS practice at great ormond or the evalina

finally go through your private policy with a fine tooth comb and don’t rely completely on NHS allied health services. This is where they’ve been cut and you need to find the best Physios, dieticians, OT’s etc you can to get her up and running.

to say, well he’s the top guy so that’s good enough for me, isn’t good enough when you’re left in limbo. You need to take second opinions and utilise all resources to get her better asap

North wales does indeed have some excellent neurologists. They often link up with Walton which is also an amazing place. I'm glad you have had a positive experience. Private is not always better or indeed even an option in rural areas, especially for neuro. You need specialists and it sounds like you are already under them which is great. It may not be FND so I don't think people should be jumping to that conclusion. It sounds like they are still investigating and ruling other things out, hence the physio. But whatever it is you need to enable your dd some form of independence. An OT should be able to help with this.

ODFOD. There isn't a definitive diagnosis for many neurological symptoms, especially early on. Posters on here, egging the OP on to demand more investigations, are talking out of their arse. You are inciting her to put her DD through potentially harmful and painful investigations, that are very, very unlikely to yield any result. Every investigation carries a risk - not just of infection (blood tests/lumbar puncture), pain, exposure to radiation etc from the investigation itself, but of preventing the patient from coming to terms with their condition. Futile searches for small-print diagnoses, where there is no real indication to perform them, leave the patient in a state of suspense and delay recovery.

There are a lot of Google-qualified doctors on this thread. Don't listen to them, OP - it sounds as if your DD is getting great care.

@Toddlingturtle Why do you think the top consultant is not worth listening to?
And it is best to ask the NHS physio if more private physio will help or any other help. I know from experience that you can pay for private physio that makes zero difference with some conditions, and that a specialist NHS physio on your specific condition can make a real difference with. The idea that private is always best is not borne out by my experience.

@MissLucyEyelesbarrow I totally agree. The last thing a child with FND needs is more unnecessary tests.

It’s not I don’t think the top consultant is worth listening to. I would want a second opinion. I speak from experience. My husband lived 3 years longer than he would have if we had gone with the first top consultant. So I do actually know what I’m talking about thank you very much. My eldest child would have died if we had taken the first advice we were given. When it’s something serious I always want two opinions

That is a common treatment for nerve pain. Ordinary painkillers rarely help. Most medications are used for multiple conditions.

Is it possible for one of you to take leave from work to do the school runs?

This seems like a fairly serious and unusual situation which has developed.
Surely your employers would be understanding?

It's a crucial time the teenage years and she needs to keep going to the school she likes and interacting with people she enjoys being with.

If she's off school another entire set of issues may well arise.

And get her a wheelchair while also continuing to speak of the issue as temporary.

The side effects of the drugs hopefully will wear off in time and maybe she'll be less tired.

You are right in trying to find a way to keep DD on the same course in life and doing her normal stuff including attending the same school, it's vital that she continues that.

I am hugely sympathetic to the position you and your husband and daughter are in. My sibling has been in a very similar situation since she was around that age
She is now 40.

Trust me when I say it may be a question of short-term pain for the sake of her, and your, long term health and happiness.

She's 14. It's gcses now but then it will be post 16 education, university or work or college, travelling, going out,meeting people, enjoying life.

Getting a wheelchair might seem to make things easier in the immediate short term but it isn't going to help in the fullness of time.

I really strongly recommend that you read this book, particularly the last chapter. I wish that my mum had read it and understood it when my sister was your daughter's age. My sister is now 40 and completely dependent in all ways on my mum who is 76, and this is without any physiological reason.

amzn.eu/d/5lZDpW0

I suffered from similar a few years ago, just one foot, not both.
Without bad mouthing, the NHS physios were next to useless and were just doing strengthening exercises etc. I ended up going private after hearing the same name over and over again. I was walking again in 2 sessions. Longer term I needed a discectomy when they eventually found the damaged nerve, but I wouldn't have been anywhere without the private physio. Ask around in your local area for the best non NHS physios and get your private insurance to cover it.
Awful for your daughter. Hope is gets sorted soon.

@Catapultaway I had the opposite. Private physio who was reputedly the best made no difference. NHS physio working with consultant as part of a team led to real improvement.

Agree with the PP about managing FND with as little fuss as possible and not buying mobility aids or carrying her around.

It will feel harsh. But if you'd met patients in their twenties who are entirely wheelchair dependent, obese, muscle wasted and in some cases with surgically inserted catheters you would see the terrible harm FND can lead to if not nipped in the bud by the right team early on.

There are a lot of physio's, nhs and private. Finding a good one, who really knows about your condition is very hard. Similar with consultants too. Especially if you have a condition that is not that well known/ slightly unusual. Especially a condition (as some are) that is quite well known for : as soon as someone hears about it they fob you off / compartmentalise you .... oh it's can't be xxx, it's because you've got xxx.

OP has a dd who has had something happen to her that is affecting her a lot, and affecting the whole family a lot. These things throw you in life, they change everything.

But giving her no choice could destroy her mental health. She is on half term next week. Desperate to go for a walk with her best friend to a national trust place. Deny her that cos I cant physically carry her round?! 🤦🏼‍♀️ not a chance.

She reckons she can go swimming if she gets in the pool. DH cannot carry her. She's a slight thing , 7 st, but for h&s understandably, the pool want her wheeled to the side of the pool or there is a hoist.

We're asking the consultants about the Walton.

And we've had a second opinion if you think about it. Seen the neurologist at alder hey and seen a second neurologist at Bangor hospital. 2 consultants , 2 separate hospitals. Same outcome.

OP you wouldn’t be encouraged to carry your daughter round the NT property, but you also wouldn’t be encouraged to use a wheelchair. I envisage you would be encouraged to do another activity (so could the friend come to the garden say and you encourage your daughter to mobilise out there independently). So your child is still socialising, but is not accepting she needs a wheelchair to go out and visit friends.

Swimming is recommended, but again I am sure using wheelchairs and hoists would not be encouraged. I think again you would be encouraged to get her mobility up so she can get to the pool independently.

I really recommend you speak to the neurologist about this issue (how do we manage in the interim, give the above examples), because while I have no doubt you are trying to do what’s best for your child, you may find it’s actually not.

If the neurologist comes back and says “yep use a wheelchair to get her to her activities, school etc” then you’ll also have the reassurance you are doing the right thing.

FND emerges to meet a subconscious need/emotional difficulty much like non-epileptic seizures. The problem is if you adapt someone's life around their symptoms and entrench the idea that they're disabled they will make this part of their identity and it is extremely hard to come back from.

Out of the goodness of your heart you've been carrying her around. But it's like if someone had a non-epileptic seizure and everyone ran around caring for them, giving medication etc. - it reinforces subconsciously that this is how to get my needs met, this is how I express my distress.

FND isn't a conscious process, but it is the expression of a need or an emotional state through physical symptoms that are experienced as very real for the patient. Much like a panic attack causing palpitations.

If she reckons she can go swimming, despite her legs not working, that is a sign that she isn't totally entrenched in her symptoms yet and you may be able to make some headway by persuading her to "just try" things and "see if maybe today is a better day for your symptoms".

In the nicest possible way, not going to a National Trust property in half-term is fairly trivial compared to the possible (likely) outcomes if FND is not addressed properly.

I have shared with you my experiences of this within my own family. Prioritising immediate, short-term fixes is very damaging in the long run. My sister is jobless, single, childless (and will almost certainly remain so). She's never held down more than a casual job. It took her 8 years to complete a 3-year degree due to lack of attendance, anxiety, etc. She can't drive or use public transport. She has lost all of her friends. At 40, she is completely dependent on my mid-70s parents. Her life consists of appointments with therapists, psychologists, etc.

This is the future you are potentially facing if you start using wheelchairs and hoists for a young girl when two neurologists, and a number of scans, have confirmed that there is no physical reason for her mobility issues.

This is an absolutely brilliant post from someone who clearly knows what they are talking about.

I would also add that all of the caring, fuss, attention, being carried around by parents, listened to by doctors, etc. is meeting a need. If someone adopts that 'patient role' it can become their whole life, as it has done for my sister.

My mum has spent 25 years bending over backwards to do everything for my sister - driving her everywhere, running up and down the stairs, getting her a specially adapted accommodation for disabled students at university, getting her extensions and deferrals. It has not been a success. Every little short term success has just played into the bigger picture, and my sister has nothing meaningful or worthwhile in her life. Please don't do this for your daughter. Sometimes what looks like 'helping' isn't helping at all.

Agree with this, sadly, from my own experience.

Your daughter needs immense amounts of care and support right now. But the care she needs is not primarily for the physical issues, which are just a symptom of her emotional struggles. She needs a therapist who she can talk to freely, support with reducing the stresses in her life, even once the symptoms go away, and treatment for any trauma she may have experienced (which you may not be aware of and she may be suppressing).

I don't have knowledge of the wheelchair vs non-wheelchair debate. But make sure the focus on the physical issues does not become the main way she gets love and care.

I'd recommend seeking support for yourself as well, so that you in turn are able to support her calmly.