Autistic dd flat out refusing to walk

[Concernfordd1]

Name changed as outing

My dd, 6, with autism, has suddenly decided that she will no longer be walking

She is non verbal so can't tell me why

I don't know whether she is in pain or has broken a limb, it doesnt seem like it

I've applied slight pressure to her legs and she doesnt react

Today she crawled on the pavement in the rain, and sat in Sainsbury's car park until I carried her to the car. Then she has just wet herself instead of going to the toilet

Whats going on?

I am thinking to take her to a&e tomorrow and then send her to school in her buggy (which by now will be too small but she might just fit)

Has anyone experienced this? If so please help 🤷‍♀️🤷‍♀️ i'm getting very worried

Lead poisoning can cause pain in joints and muscles and tingling or pain in hands and feet.

I have known kids with Pica to eat radiator paint before, sounds like they are covering all bases.

https://kidshealth.org/en/parents/lead-poisoning.html

Good that you are able to go home, some normality for your daughter and you get to spend time with your poor cat too. Hopefully the MRI on Monday will go well. The good thing is I guess that your daughter seems better in herself even if she is not walking at the moment. Maybe they think that now she is feeling better going home to a more familiar environment might trigger her to resume mobilising. If not at least you have further investigations booked in and they are not leaving any stone unturned.

We've just moved to an old victorian flat and the radiator next to our bed has come apart, i've attached

Dd puts her fingers in her mouth as a coping mechanism and has been eating tissue and dry instant noodles

It is very very possible that she has ingested lead 😳

So the radiator has 4 sections and the top and sides have come off so the inside is exposed

Oh god - I have asked to speak to the doctor again 🥺

That looks like a modern radiator so it might not be an issue, however an older single radiator painted in layers before lead paint was banned or more likely the pipework may be more likely.

I asked DH who used to survey properties, he says old properties may have lead piping. He says in any of the piping exposed because even when the radiator is switched off the pipes get hot and the paint flakes off.

I would take some pictures of the pipework and get a lead test kit like these swabs.

www.diy.com/departments/lead-test-kit-20-x-instant-testing-swabs-for-lead-inc-lead-paint-/5060965100325_BQ.prd

Thank you very much @Choconuttolata - this is very kind of you and helpful xx

I will take photos at home and i am waiting to see the doctor to discuss this

She definitely puts things into her mouth and I can imagine her looking for sweets shes hidden and picking up something else 🥺

I agree with the above, that is a modern radiator. Lead paint was banned in the UK just over 30 years ago so you’d be looking for things that haven’t been painted for decades, are flaking off several layers of paint, or very cheap toys/decorations such as from Shein or Temu that may have dodgy paint on but I think they’d have to be well-chewed

Consider other locations that may have lead. Houses of family members / childminders. Does she sit near an old radiator at school for example?

Still here waiting to go home, have been since this morning!!

Dd has now fallen asleep which means a horrifically late night for us

Is there any way of telling where abouts it hurting? I mean you say she’s bum shuffling, will she kneel or even crawl (on carpet or on the bed)?

Hi everyone

Sorry for the radio silence. We have covid and spent yesterday in bed, and plan to do the same today.

Dd is unable to walk still. I tried getting her to jump on the bed (something she used to love to do, and i'd give anything for her to do again) but nothing

Crawling around, but getting tired from doing so

I wonder if her muscles are weak, which the doctors ruled out initially

Back tomorrow for 10 am to ambulatory care. She should be having another mri

Then, I dont know whats next 😪

She does seem more herself though and wants me to take her to sainsburys for some sweeties, so the fever symptoms are not there

But ive honestly got no idea whats wrong re walking 😕 xx

She can kneel a little and crawl but prefers to bum shuffle

She gets tired easily as well

She cant say what is wrong 😪

I can ask her school. At home, no old lead paint x

It could be the Covid. When I had it the first time I had intense body aches, but also shooting, burning nerve pain in my legs. Ice packs and amitriptyline helped me in the end as it went on for weeks and I couldn't walk further than the front of the driveway.

DH currently has Covid and is experiencing the same thing, all over body aches, back pain like being kicked in the back and the nerve pains in his legs. He has nortriptyline prescribed anyway for another neurological condition and that helped him at least get some sleep last night (he can't have amitriptyline). He is autistic so is hypersensitive to pain and was really struggling.

Okay off to ambulatory care soon. Need to pop to lidl and greggs before hand

Me and dd left our house in zone 5 to move to a top floor flat in Zone 2 for our new city life. Now its looking like she could be wheelchair bound 🥺

I have much respect for carers of wheelchair users but I dont think i can do this. She is already heavy for me at aged 6

I know I sound nasty but I had to get it out 😢

Don’t despair OP. Take one day at a time. You don’t know she’s going to become a wheelchair user. Hope you are both feeling better soon.

Don't rush ahead with your worries, take it one stage at a time. You don't know this is permanent or even what's causing it yet. When you find your thoughts racing try and limit your thinking to the next 24 hours. Just focus on what you need to do to get things done today, that's your only job for now. x

You don’t sound nasty. You sound like a carer who is dealing with a lot at the moment. I know it’s hard to avoid thinking ahead in situations like these, you’ll do what you need to do that suits you and your daughter, whatever that may be. You already sound like you are doing pretty well in the mum stakes, your daughter is very lucky to have you!

The first time I had COVID, I was bed bound for weeks. I was sore all over & I had no energy. It took me more than 4 weeks to feel back to normal energy wise. The pain in my arms & legs lasted weeks too. Hopefully the pain she is feeling will subside & she will be back to walking again!

Op I can't remember if anyone has suggested this, but could you take her to a shallow swimming pool (probably with a life jacket on) once youre better from the covid? You could see if she does any weight bearing or pushing off the floor in the water. It might get her brain used to the feeling of doing that again, or it might just show you that she won't even put her feet down with the weightlessness of water helping her. If she is in any pain could potentially help ease that.

@Concernfordd1 how are you getting on? How is your DD?

Hope all is well 🙏

Hi everyone

Thank you so much for the kindness. I caught dd's covid and have been wiped out! Literally lost Tuesday and wednesday to it 🙃 and spent yesterday struggling with breathing. Its no joke is covid!

Dd is still the same. We came home on monday night after going to ambulatory care. They told us that they would call her in for an mri the next day, but now it should be during half term

Her school attendance is 60% and they're unhappy 🙁

She went in to school yesterday, they were trying to encourage her to walk. They said she takes a step or two and then falls to the floor laughing

They think she is making a choice. The physio we saw thinks its a choice. I can tell the doctors no longer feel the need to take it so seriously.

But I cant shake the feeling that i'm missing something. When she is laughing, its usually because she wants to express discomfort but cant. I dunno.

So another week at school for her. She will go in her buggy as they can't lift her, shes tall for 6 so is heavy. Im grateful and hope that the return to the routine will help. They said they couldnt motivate her to walk at all, with her favourite toys etc and I said the same

A lady above mentioned swimming, thank you xx - Dd loves swimming so will try it out either this weekend or over half term

I honestly dont know what else to do really. We cant carry on living here if she cant walk and will need to ask the council to start the process to move somewhere on the ground floor or with a lift.

So next is trying swimming to see whether she wants to try walking or how she can weight bare under water. The mri. Getting a disability buggy

Then who knows 😪

❤️❤️

@Concernfordd1 that sounds very frustrating for you, and to get Covid on top of everything else.

It does seem odd that she would suddenly choose to not walk for no reason. I think that you should trust your instincts and keep trying to figure it out.

Thank you for this, I couldnt find you when I scrolled back - will try it xx

Thank you - I feel the same, I cant just write it off

I know i'm less experienced than the docs and staff who work with SEN - but my dd laying in sainsburys car park in the rain because she cant walk isnt just something she thought would be fun 🥺🥺 xx

Did you notice any abnormalities in her gait just before she started not walking? Or did she seem to tire easily or anything else different? X

She did seem to tire more easily now ive thought about it and has been for a while

We went for a walk on the sunday before, only half a mile, rather than taking the car

She would sob if expected to walk around the supermarket, but I put it down to laziness (I would often stick her in the trolley to stop her from eloping)

Then thursday shes seeming not to want to walk, sliding down the stairs - then friday 3rd october nothing at all

I have such a rubbish memory and now i am replaying things, I just dont think its behavioural, I think that there have been signs 🥺 xx