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.

I’m sure someone has said this but PALS would be a good place to start re school taxis.

It’s really important she doesn’t change school for her mental health.

Another FND sufferer here. It does sound functional though I'm no expert. It's very difficult to diagnose and treat as it presents so differently in people.

Wishing your daughter and you all the best!

OP ignore all those telling you to go private. As you say in your case the NHS has been brilliant and your DD has had loads of tests. Putting her through the exact same tests privately will not help her and just cause additional stress. Far better to follow the suggestions of those on here around treatment for FND.

PALS would be a good place to start re school taxis.

They really wouldn't. PALS has nothing to do with school transport.

Ok - work on what you know. Get her some vitamin D. I take Nature's Aid high strength liquid drops.

Do you have any neurological or auto-immune conditions in the family?

Sorry OP, I know you were asking about the practicalities of accessing school etc rather than questioning the diagnosis.
If it is as sounds like they are suggesting, FND, then often too many adaptations to the condition is not always the best for long term recovery as impractical and impossible as this sounds- hence the need for correct management and early psychological support. Good to hear she is seeing a physio- I’d just make sure they have experience with FND. All the very best.

Also OP - don't go crazy with the vitamin D. Take half of the recommend dose on the bottle or less, and consult a GP.

I ask about her b12 and folate levels

B12 - can cause numbness and can come on suddenly - I've known of people who were in wheelchairs until their deficiencies were controlled.

Is it possible that your dd has been near those laughing gas canisters (my DC is the same age and knows people who have used it) they cause sudden and dramatic b12 deficiency

She needs an OT assessment urgently.

Agree with @Silentmama . She needs a whole raft of blood tests, and make sure you get print outs of the results. You might get a bit of resistance, but you are entitled to that information. Might be handy.

I was also going to suggest FND.

This makes sense.

@TheYearOfSmallThings I also came to say the same about GBS. Thats usually incredibly quick and the person is on ITU within hours.

This. Most of the diagnosis suggestions on this thread are things that would have been ruled out on Day 1, let alone this far down the line. Er yes, a consultant paediatric neurologist at a tertiary referral centre has probably thought of B12 and Guillain-Barré...

There are many neurological disorders for which no definitive diagnostic test exists. It's really tough for patients, as you have to live with the uncertainty (I have one of these conditions myself). But the answer is not more and more tests. You have to have a working diagnosis, and treat that, but also be prepared to revisit that diagnosis if symptoms change.

It sounds as if your neurologist has a working diagnosis of FND, OP, but is also keeping an open mind, which is perfect.

OP did the doctors recommend the purchase of a wheelchair? I say this as a parent of a child with FND and we were told in no uncertain terms purchasing a wheelchair would make our child worse. (We were like you just trying to facilitate getting child back to school). I know if we had suggested looking for blue badges we would have been told the same.

The theory being you are trying to retrain the mind/wiring and wheelchairs/mobility aids will lead to deconditioning and entrenchment.

My advice would be to not worry about getting her to school per se at the moment (get work sent home). I would focus on finding a physio privately who specialises in children with FND/pain disorders and try and get them in everyday and focus on improving mobility in the hope that can improve to the stage your child can independently get in (even on crutches). There's a couple of paediatric NHS units and they aim to do that within 1 week/2 week (with physio everyday).

We were also advised to get a child psychologist.

Your health insurance may cover this (but not guaranteed).

My child we managed to get them back to school after 2 weeks. 1 hour a day and then worked up (When we eventually got to an NHS service 5 months later, that was what they would have done in any event. 2 weeks rehab physio, OT, school and psychology each day. The focus is on improving function not symptoms, basically getting them back to school and normal activities. Again the logic being this will help retrain the mind).

GOSH's private wing is the only place in the country with a paediatric FND service and then it is just advisory. Their theory is very much that this condition is an unmet emotional need and will likely advise support from a psychologist and explore any undiagnosed SEN.

Wishing you all the best. Unfortunately, once your child has been diagnosed with a "functional disorder" support is limited. Lots of "don't do that you'll make your child worse" and not a lot of "do this, this will make them better".

Gosh OP I’m so sorry. It does sound like there is a working diagnosis - I wish her a full recovery.

I don’t have practical advice re the bus but I wondered about dystonia. There is a form of dystonia that, while rare, is the most common form of inherited limb dystonia seen in people of Ashkenazi Jewish descent. It is called DYT-TOR1A — named for the gene that is abnormal in this disease. It’s just a thought.

OP as an aside PIP is not available for children. You can claim DLA, but your child has to have been suffering symptoms for 3 months. Currently from application the wait list is around 3 months for a decision.

OP, I think this post is one to really take note of.
@BlueBellIris sorry to hear you and your child went through this, but glad to hear they are recovering.

I knew someone at college who had that briefly after his parents' divorce.

Has anything new that's upsetting happened or something?

If she does get the all clear physically then some talking therapies etc are said to help, and medication.

I don't know if she'll get a Blue Badge (yet and hopefully will never need one) as she hasn't been ill long in the great scheme of things and hopefully could already be starting to recover- I hope she does ASAP. x

Lots of "don't do that you'll make your child worse" and not a lot of "do this, this will make them better"

So often true, unfortunately - both for functional disorders and anything pain-related.

a 14 yr old I know had similar and was diagnosed FND. Seeing a neurophysio was the turning point for her, if you have private access to one utilise it. A year on and you wouldn’t know that there had ever been anything wrong

With respect to previous posters, I don't think the idea of "don't get a wheelchair if it's FND" is always very helpful. If the option is not going anywhere, or going somewhere but in a wheelchair, then surely the latter is better for our mental health? FND is a very varied condition, and it's best to consult the doctors who are seeing the patient. Especially as some patients experience drop attacks which are at best inconvenient and at worst dangerous when they happen out and about, and if they're frequent then walking longer distances is rather impractical. It can also come with other comorbidities that may require the use of a wheelchair - my neuro said it's frequently found with fibromyalgia, POTS, and ME. Doesn't sound like that's the case with OP's DD atm but something to look out for, my symptoms of the other three came slightly later than the loss of limb function. That said, obviously neuro physio should help (if neurophysio in your area will actually see FND patients), and keeping in condition with exercise such as swimming which I for one find easier than walking.

I would also like to point out on this thread that FND is no longer considered to be always psychologically triggered. Sometimes there is a correlation, sometimes there is not. Often there is a history of psychological trauma and mental illness, but sometimes there is not. There are also positive signs, specifically Hoover's Sign, rather than merely being a diagnosis of elimination.

I don’t think people are understanding that there isn’t always a diagnosis, functional diseases are real and devastating, but don’t have obvious causes

She goes to west Kirby. We've always lives in wales. They've put a bus onto west Kirby for years as there are lots of local children passing the 11+ and west Kirby and Calday need the numbers so welcome welsh children. I think under the disability act the coaches/buses have to be wheelchair accessible so we're hoping for that. Dd just loves school. Doesn't want to go anywhere else else. She was thriving academically.

It's not necessarily about the initial trigger, which can be physical (eg pulled muscle/trapped nerve) but about the fact that there is no physiological cause preventing the use of the legs. A wheelchair reinforces the belief that her legs are useless and weak and don't work.

Fibro and ME are diagnoses of exclusion.
POTS is a diagnosis defined by a threshold and again can be a self-fulfilling prophecy. Yes, they do all tend to co occur with FND.

A wheelchair may be helpful in the short term but not when looking at the bigger picture, particularly for a 14 year old.

I have a family member who is now 40 years old and I wish that fnd had been better understood when she was a teenager. She might then have been able to recover and live a full adult life.