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

It does sound like there have been signs 💐 Can you think of anything else that changed before it started, even if it didn't seem like anything much at the time? Like an infection or a minor injury or anything really? X
Edit: Thats probably worded badly, I didn't mean at all that you should've noticed earlier, its so easy to miss small things x

But you know your daughter better than anyone else!

Just a suggestion, but what about super soft fluffy slippers with arch support. When I had plantar fasciitis my feet was so painful. I’m not saying it’s that but might be worth a try.

A doctor called me after posting this, one of the senior doctors' team of juniors if that makes sense

Theyre taking it seriously and think that the mri will tell us more and to keep on keeping her comfy and checking for urine problems

Dd pooped the other day, fine as normal

The doctor said that there is lead in her urine or bloods and they dont know why. Not an alarming level but a weird level

I'm now racking my brains as to how that could've happened

I will ask about school radiators

I cant think of anything else honestly. Her routine has changed a little i guess. Back to school, i'm exhausted myself anyway without all this, maybe shes picked up on that

Thanks for your edit, its okay I got your intent and agree, it must be something small that I have missed. Honestly I've been trudging through, trying to arrange a school place for her (we moved so live far from her school now) and have been stressed with it all 🥺🙈

Dd deserves the best, honestly x

🥺 yes, i have to fight for her x

Thank you, will pick some up on monday at asda, cant hurt xx

Lead paint wasn’t just on radiators, it could be walls or window sills or skirting boards that have been painted over the old layers. Have you had time to check her room thoroughly, maybe she picks at cracks in the plaster?

Other sources could be costume jewellery using lead to make it feel heavier or cheap plastic imported toys that have slipped through illegally. The sort of stuff that you might find as party bag fillers.

Also lead pipes, but I think that has already been mentioned.

I think you should contact the council environmental health people and ask for someone to come and check your flat for lead. Tell them your child is sick & the doctors have found raised levels in her blood.

This is a good point. Along these lines actually a lot of cheaply imported crap has suspicious things in it - lead can be in the paint on cups, plates and toys.

Sending you hugs, @Concernfordd1, hope you recover from covid quickly and that the doctors get to the bottom of the root of problem.

Contacting environmental health is a good call. 💐

How's it going @Concernfordd1 ?

Thank you for thinking of me @Ficklebricks ❤️

Still quite the same. She had an mri on monday but it was inconclusive as she woke up during it, from the sedation. We had an ultrasound on her foot yesterday but they need to do another mri.

Still no concrete walking. She is able to walk a few steps here and there but then sits down and refuses to walk.

Her school think she is making a conscious choice. I really see where theyre coming from.

I am trying to be more positive around her and smiley. She does take some steps in and around home as and when she wants but nothing where I can say that she is 100% fine and just needs behaviour adjustment

Ive bought a wheelchair for her, need to unpack it actually. And I am trying to source a disability buggy from a charity

Back to the hospital for the mri and then god knows tbh

Other than that she is her complete normal self.

I'm worn down by it all tbh now, and just want an answer. All I can do on my end is make sure that she is happy and feels safe and loved so that if its behavioural, she might snap out of it

I have shouted occasionally, losing my rag, which i'm ashamed of and it does seem to make her less cooperative.

She is also refusing to sit up now, preferring to lay down or slouch. I dont know if there's something internal affecting her whole body, but her breathing is normal and temperature is fine 🥺

Honestly thats the update really. Will come back and update once we've had the next mri as well but everyone is stumped xx

It's good to hear that apart from the walking she is mostly her normal self. That suggests she isn't in any real pain which is positive.

When we had the autism assessment for my daughter they asked about any periods of regression, like lapses in speech or toilet skills. It's very common for autistic children to suddenly lose the ability to do things they had previously mastered. I wonder if this could be a more extreme form of regression?

Hopefully the next MRI will be completed and it might provide some answers.

Keep doing what you're doing, you sound like a great mum and you're being very strong for her x

You sound very drained by it all. Any chance of doing something to top you back up?

I hope you do get to the bottom if it.

I just wanted to suggest getting a blood test for coeliac disease as that can really affect energy levels leading to reluctance to walk. It also leads to deficiencies such as anaemia and one the way the body responds is to eat substances such as paper or soil (pica) which could explain the lead finding?

i wonder if she needs to see a psychologist op?

If you Google 'My autistic son refuses to walk. He used to walk but once I carried him as he wasn't well and now he refuses to walk outside. Please help!', there is a thread on FB from someone going through similar - perhaps some suggestions there might help - it's from Autism Parents Support Group.

Hiya everyone

Sorry for the delay in updating the thread. It's a long one !

I've tried to separate it so its easier to read.

Current status:

Still no improvement with DD and imo she is getting worse. She has gone from not wanting to walk to now not even wanting to hold herself up. She will slump to the left, wherever I put her. So in the car, she would slouch down, and in her buggy the same.

She currently is refusing to eat and is asleep. I wonder whether she has a cold or whether something is seriously wrong. She has no fever, no runny nose, but just is lethargic, doesn't want to eat or drink.

Re the hospital this week:

So I took dd for the MRI on Monday. She woke up during and they couldn't get a photo of her left leg, but managed to get everything else. We left and they called me on Tuesday, I think, to bring her in for an ultrasound of her foot. I think I took her on Tuesday and they couldn't get a proper look as dd couldn't abide the feel of the jelly on her foot, understandably. We waited for ages after to be sent home.

anyway then they called me to bring her back for Friday for another MRI of her foot. This time I suggested that they give her the sedation outside of the MRI room as the journey from her hospital room to the MRI place woke her up. They couldn't do that but gave her the sedation just before we went down to MRI, and then we waited in a room and she went to sleep. They got the final MRI of her foot and they said it looks a little inflamed and to give her nurofen in her fruit shoot, which is the only way I can get it into her.

black eye
another thing was that dd got a black eye on Wednesday! I was decorating the hallway and left her in our bedroom with the mattress on the floor (long story re broken bed), soft toys, tv and an Ikea chest of drawers unit. I didn't see but the only thing that could've happened was that she was rolling around and hit her eye on the corner of the chest of drawers unit.

the hospital were very hot on it, questioning me over and over as to how she hurt her eye. tbh, in the grand scheme of things, her eye wasn't a concern of mine, but I did bring it up to one doctor at the start of the day. then three separate docs came to ask me about it, following their safeguarding procedure

I completely understood but bloody hell was it intense! I ended up saying, I just haven't hurt her, and they said they believe me. Maybe they'll refer her to social services, I'm so exhausted I can't even be worried about it tbh

and that's it, re the hospital visits. They said to come back in a few weeks for a follow up, and to try the nurofen and see if there is any improvement.

events timeline

in my mind now, this is the new timeline of events:
1 - DD was kind of unhappy about walking, wanting to be carried more and was unhappy at walking around Sainsbury's, despite previously enjoying running around looking for cupcakes

2 - DD flat out refusing to walk into her classroom on Friday 26th Oct. Dd bumshuffling from her classroom to the car after school on the same day. DD sitting in Sainsburys car park in the rain, refusing to walk.

3 - DD being taken to hospital on or around 29th Oct following the initial concerns

4 - DD spending days in hospital following her first MRI and catching covid

5 - 13th Oct - us both being wiped out by covid

6 - on or around 20th - back to school for final week before half term

7 - Half term begins - DD still refusing to walk, but also not wanting to even sit up

7 - mri on 27th Oct

8 - thurs 30th - dd has mri of foot. is groggy after sedation but eats dinner and has a drink at home

9 - fri 31st - DD barely eating

10 - now - dd eating nothing at all, laying down on the floor completely lethargic. no temperature, no cold symptoms, no cough

Conclusion (😅 its an essay!)
so now just going to see how she is through the night and decide on whether to take her to ambulatory care tomorrow morning if no improvement.

Thanks for the support everyone, I really appreciate it. To the lady who mentioned celiac disease, I will try going gluten free for her if we get past this current situation, I'm praying.

It could be good for her autism and adhd as well tbh

anyway that's us 🩷🩷🩷

Oh, OP - that sounds terribly difficult. It does sound like there’s some kind of physical cause and hopefully it will be ascertained quite soon now. You’re such an incredible mum. Is anyone supporting you while this is going on?

I honestly am thinking its something very serious

Thank you, its just me. Me, her and the cat 🥺

Just need to keep going, one day at a time. Ive called the doctors now to ask if I can bring her in tomorrow, just waiting on a call back xx

Just as a note of solidarity, I'm a mum to an autistic DS age 5 who has a severe speech delay so can't say "yes I was bouncing on my bed and slipped and whacked my face hence my ridiculously huge black eye, no my mam didn't and has never hit me even when I've pushed her way passed her patience!" So I get the horror of the scrutiny of the safeguarding questions which I'm grateful they ask but are awful to be subjected to when you know you are innocent. I understand this is the least of your concerns right now but wanted to let you know that they may refer onto social who will want to talk to you, this could be a good opportunity to advocate for a disability social worker for your daughter to try and put a positive spin on a very difficult situation.
Please keep updating and have the knowledge that I and other PPs are thinking of you and your daughter and are keeping you in our prayers. I hope the next update is a diagnosis at a minimum as it's always better to know what you are dealing with no matter how scary over not knowing x

Please do not go gluten free before a coeliac c antibody blood test . Very important to eat gluten for more than six weeks before the test

You can get coeliac neurological symptoms including apraxia (wobbly walking) but you must be eating gluten to test.

Definitely she needs another look and paediatrician to try pull all strands together

Hey everyone

So after writing the post, I talked to ambulatory care who told me to bring dd to a&e. She hasnt eaten or drank in 24 hours now 🥺, didnt realise how long it had been since she drank anything

So we are in a&e now, i'm gonna ask to start looking at scary causes because this cant be behaviour related 🥺

Please keep us in your prayers and thank you so much for the support, it genuinely is getting me through this xxx

Thank you 🥺❤️, I am very grateful xx

Yeah, cant hurt having a disability social worker tbh, and i will update the school as to what happened so theyre prepared if they get a call

Something to ask about ? The boy who stopped walking… - PMC share.google/OTB5CP74P6AHDdpiw

Benign Acute Childhood Myositis: Perplexing Complication after Acute Viral Pharyngitis - PMC https://share.google/MmOd6QUqIhfh8MLRR

Ask them what is the differential diahnosis? What have you ruled out? What is still on the list?