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

My ASD dd once went over 24 hours without peeing at 2yo because we were forced to briefly use a different brand of nappy. As soon as we acquired the correct kind, the situation was rectified. We were of course worried she was horribly ill the entire time, but she was consciously without holding her very overfull bladder.

my point is that this could be serious, but it could be something ridiculously trivial. Since she can’t communicate as easily, look for any changes at all. Even something that seems benign to you may be causing her distress.

I also post to say, hopefully this is nothing serious and just one of those moments that as an ASD parent you will be able to look back on years later and laugh about. As in remember the time we bought new socks because her feet grew and she stopped walking.

Hi everyone, sorry I didnt respond sooner - I am a mess 😭😭

I am wondering if dd is constipated??

She hasnt been since Tuesday, I think

I cant remember fully because I wasnt thinking to keep track. She usually goes every couple of days

Ive given her movicol since Saturdays morning and a chicken curry but nothing yet 😕

Would constipation cause her not to want to walk? I think that could be it

It could be, if she’s not been for a while and it’s become large it might be hurting as it pressing on beginning to stretch the sphincter. All activity ups the body’s attempts to empty the bowel, so of scared of passing the poo they will avoid it.

she might also have a tummy ache/cramping made worse by movement.

i have an autistic sister and my mum had years of her refusing to walk or play and sitting down on stuff to try and stop the poo coming out.

You are doing the right thing, by working through the possibilities and eliminating them. You are an attentive mum doing your best, try not to be hard on yourself x

It could be constipation which might explain the wetting accidents too. Keep going with the movicol, have you been prescribed it to use on a disimpaction routine or maintenance? Speak to the GP about disimpaction if you are not sure what to do.

https://eric.org.uk/childrens-bowels/parents-guide-to-disimpaction/

ERIC have some good advice and a video for managing constipation in children with additional needs so the website is worth exploring.

Yes constipation can absolutely cause host 9f symptoms
Definitely that timing fits
Try daily probiotics too for maintenance

Xray of tummy woukd confirm blockage you doing right thing with movicol

Would it?

I think that if there is no poop today I will take her back to a&e tomorrow 😪

Poor little thing isnt herself anymore and isnt eating. Got the gp calling me soon

My son was constipated recently and was confirmed by gp during appointment just feeling his tummy - don’t think it necessarily needs an xray. Was recommended 3 sachets of movicol a day.

She needs to see a paediatrician. My ds had a behavioural reaction to what should have been a very minor injury and was diagnosed with conversion syndrome. It took quite a while to deal with.

Yeh guidelines don't suggest xray it was long time ago when ds with asd had xray to confirm

Overview | Constipation in children and young people: diagnosis and management | Guidance | NICE https://share.google/O9eVj4ty9yjabdqsp

Hey everyone

At a&e again now

Dd is worse than on saturday. No rolling around and playing with teddies, she is lethargic and sat in her buggy with the tablet

She was very warm last night but isnt now. She managed to poop a little last night with a suppository but tbh not much came out and she is barely eating

I'm wondering if she is in pain with a limb and its causing problems

Or she is constipated severely and its causing the problems

😪😪 will push again for an xray but will I sound mad to ask for one of her stomach and legs?

I think you'd be best to describe all symptoms. Depending on what they say, you can ask why they don't want to x-ray or whatever- they should be willing & able to justify it. EG - she doesn't seem to be in any pain - you can explain that she doesn't express pain as a typical child would.

Ask them if they have done the Oliver McGowen training. If they say yes then say “so you’ll be aware that autistic patients can present differently from NT patients and have incongruent presentations to being in pain?”

Then follow that up with “are you deciding to take further no action with regard to investigations?”

Then you can say “in that case please document that as a parent I am clearly telling you something is very different and concerning about my child’s behaviour based on our knowledge of how she behaves normally day to day and have I serious concerns something is wrong with my child that they cannot express due to their communication difficulties. Please document that despite my concerns you will be taking no further action so it will be clear and documented should there be any investigations into my child’s care to due preventable adverse outcomes”

There have been more cases hitting th news again recently of children suffering undue harm/death due to healthcare providers ignoring parents insistence something is off with their children because drs and staff refused to factor ND children’s altered presentation when unwell and in pain into account. Don't be afraid to mention it.

Is it a children's A&E or a general A&E? If children's then ask for a paediatric registrar or consultant to review her, if not ask if they have a paediatric assessment unit attached where she can be reviewed by a paediatric registrar. General A&E junior doctors and adult trained doctors may not have the required experience of ND non-verbal children and how they present when unwell.

They need to take your concerns about her behaviour change seriously, request a senior opinion and refuse to leave until you get it. Sometimes you have to shout louder to get yourself taken seriously (I don't mean literally shout, but ask for a complaint leaflet and contact PALS if they try to refuse a senior review).

Look up about Martha's Rule and quote it at them.

www.england.nhs.uk/patient-safety/marthas-rule/information-patients-families-c
arers/

Children's a&e x

Theyre saying they cant x-ray both legs at once, but that doesnt sound right to me, surely both legs go in the machine??

Severe impacted constipation can certainly cause the issues you describe .
But stronger laxatives etc need to be prescribed and managed by paed ideally gastroenterology

They don't put " in a machine" for xray unless you mean straps if need to to hold leg straight

We just had the bowel x ray and of the hips too

I agree, there was no machine to go into, its just a photo

Dd has reached her limit and is incredibly distressed now so hopefully it is the bowels, she wants to go home

Sorry you're having a tough time of it. We'll done for being persistent - you're doing everything you can. I'm sorry you've had some unhelpful doctors too - remember they get very exhausted, and a sort of empathy burn out. They don't mean to be weird.

Very different circumstances with my (verbal, and, as far as I know, completely average) 2 yo. Took her to the GP to check for UTI or constipation after she had 8 accidents st nursery in a day. (She's toilet trained, but not 100pc reliable.) Felt like a right tit after fighting my way to a GP appointment to discover she was absolutely fine. They must have been doing something especially exciting at nursery that day...

Take care of yourself.

No backed up poop in her xray

Tiny curvature of the spine but she was wriggling during the xray

She isnt eating and hasnt eaten properly since saturday 😪😪😪

I said I think its her legs something has happened

They dont think an xray will show them and are looking at other options

Sounds like they are working their way through it. Flipping worrying for you though. I second what others have posted about paediatric assessment unit etc. thanks for the update. Health for our kids is always like doing a jigsaw on the reverse side !

Did you manage to get a urine sample? The lethargic behaviour is also a concern for a possible infection not just injury. No the XR camera machine can't do two legs in the correct position to show an injury of the bones at once. They probably did hip to rule out hip injuries, but may want to do bloods to rule out infection. Sorry it is so long for your DD but at least they are taking you seriously and being thorough this time.

Take her to A+E and buy a disability buggy suitable for her size.

Thank you everyone - the doctor is willing to give her an x-ray but is sure its not bone related

She has to have an mri 😳😳 but will need to be sedated so is in overnight

I am grateful they listened re the xray as I do worry as she did fall over a few weeks ago

She had bloods and a urine sample taken and no abnormalities in either

I could cry as i'm really worried now, thinking its clearly something more serious

You’ve done absolutely the best things you can do, at least they are keeping her in and taking it seriously.