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

Sorry she has to be admitted that will be very distressing for her to be away from home out of routine and her safe space. I hope you both manage it as best you can in the circumstances. Hopefully the MRI will be early tomorrow. The waiting is very difficult when you are worried. I am glad they didn't send you home again and are doing more investigations.

Ive left ama

Just to get her home, try and get some food down her

I can also make something she usually eats which is rice with chicken curry. She was refusing her squash, she refused mcdonalds and a donut, her favourite things 🥺

They said that the xray looks okay initially but they will check properly tomorrow

Ive got sausages in the oven which she usually loves and I can bathe us both, put on fresh clothes and pack her some toys and take her back early tomorrow morning. She cant eat from about midnight

Shes still refusing rice now but will keep trying

Thank you everyone for keeping me company during what is a journey that I am dealing with completely alone.

Its just me and dd (and our cat, who was another factor - she was completely out of food so will put out enough tomorrow morning to last the day

As much as I love arguing on mn, I am very grateful for the help and kindness I have reciveved xx

Ah that is a better option I am glad they were flexible about you going home and coming in the next day, it will be better for her to be in her own bed tonight. It is hard keeping them away from food in the morning so try to remove reminders and then take lots of distraction tools with you. You may have to watch her like a hawk as she may try to pilfer from cupboards or take other kids food on the ward if she sees it and is hungry. Hopefully she will be one of the first on the list.

Sending love and hope tomorrow’s MRI goes uneventfully and you get some answers. You sound like a fantastic Mum.

Sending good wishes to you both, you must be so worried. I’ve been in your shoes and it’s so scary when doctors don’t have the answers. They will work through things though so please try and be patient with them even if it’s incredibly frustrating. It may help writing down a timeline of symptoms and behaviours in case you get passed between different doctors on different shifts.
we’re here if you need to offload x

Thank you everyone 🥺🥺

We are back in, made it on time. Dd is very unhappy with me, poor thing.

Its a waiting game now as to whether she will get the mri scan today

She ate and drank yesterday! She ate a bowl full of rice and chicken curry. Ive made two bowls full today and some sausages which ive lugged to the hospital 😅

The bag is heavier than her, i'm sure!

I hid all of the snacks on the advice from this thread 😅 just incase she got hungry this morning but she hasnt had anything

Will keep a record of whats happened for the doctors and I am honestly so grateful for them 🥺🥺

They listened re the xray even though they were probably right. I am so so worried its something serious now but will keep going and praying and hopwfully its nothing 😪

xxx

Thanks for the update OP. I’ve been thinking about you both. Fingers crossed there’s not too much of a wait for the scan

Sending everything good to you and dd. Hope you don’t have to wait long and they Find out what’s up

You’re amazing. Well done for fighting so hard and on your own too. You’re an awesome Mama Bear and your DD is very lucky to have you in her corner. Good luck today xx

Hope it all goes well today and she gets the MRI early xx

I hope she’s ok op xx

my autistic boy fractured his ankle and was intermittently walking on it. I was dismissed when I took him in as “he seems to be putting weight on it fine”. Luckily his carer turned up at that point and I don’t k ow if it was because another professional was saying something is wrong or if it was because he was a man but they reluctantly did the x ray. Very rude to me. He has a fracture. They couldn’t believe he was walking on it. The people who cast him were confused too.

there isn’t much understanding of pain in neurodiverse children. I’m sorry you are facing this x

Hey everyone

Sorry for the late update. Things are not good at all.

She had the mri - we went down at 2.30 and finished at half 4

She had to be sedated but woke up in the machine so had to be sedated again. They didnt want to do it as she was still showing signs of stirring but I insisted and she laid still the entire time, my darling girl

Shes so good, never any trouble at all 🥺

The mri came back clear. The xray of her lower legs came back clear, no toddler fracture. Nothing in her bloods or urine.

She is very poorly now. After the sedation she was shivering and got a fever. Shes thrown up lots. I was meant to take her home for the night but after the vomiting I said no, she will stay and they definitely thought the same

They were saying they might move her to a cubicle on a ward but I'm not sure if they will now she has been vomiting.

They gave her some Iv paracetamol.

I had to leave her 😪 to go to asda and buy her an electric blanket as its freezing here.

I bought two, one for myself but I think i will return it, buy a king size one and take it home once ive finished. The single one can stay here or perhaps go in the car for another emergency

I fed the cat who is being so weird (probably angry at being left for so long, i' never gone more than 6 hours) so I hope she is okay. One member of my tiny family ill at a time please.

Please keep dd in your prayers. I am terrified. They can't rule out cancer and have no idea what it is.

When I was leaving, I ended up crying on the shoulder of a kind lady and her daughter. I didnt even ask them why they were at the hospital, I feel so bad.

I'm here now, dd is on my lap and we're watching the new episodes of Hey Duggee

Please pray that she will be okay. And that its nothing serious and that i wont lose her. She is my everything

I've just been praying for you, OP, and your little daughter. God bless you, and give you both rest tonight.

Sending you lots of love after your stressful day today. Shivering sounds more like infection. At least she’s in the right place. So incredibly tough for you both. You are an incredible mum. 💐💝

That is good news that the scan and X-rays were clear. Not good that she is vomiting. It sounds like she has a bug with the fever as well so they should still put her on a cubicle so it will be quieter for her and you tonight. Some cancers can be ruled out by bloods, so if the bloods are clear then try not to think the worst. Covid is doing the rounds again at the moment and can cause leg and joint pain, fever and vomiting, so ask if they can swab her for viruses and either run a rapid test if they have them or send the swab to the lab just in case. The sedation coming out of her system is probably not helping either, hopefully she will feel a bit better in the morning xx

So sorry. Very scary for you. It's so hard when they do things in a not usual presentation.

Sent you a PM.

Sending love and my thoughts for you both x

It’s probably been checked for but worth ruling out type 1 diabetes with the excess weeing, tiredness etc. Hope you get sorted.

Sending all good wishes, comfort and care.

Sorry to hear your darling girl is so unwell.
I know nothing but my baby had cancer and it was nothing like this. She is fine now, many years later.
I really feel for you and pray for your DD. Hope you get some reassuring answers soon.

So sorry to read this, OP. I really hope that the morning will bring a big improvement for your lovely DD.

❤️ She's so lucky to have you. ❤️

I’m ABSOLUTELY no expert either, @Concernfordd1 but UTI was my first thought.

Just read your last update @Concernfordd1
Have faith.
Remember - God doesn’t give you anything He doesn’t think you can’t handle.
My mum used to say that to me.
I’m praying for you and your girl.
Sending love from faraway ❤️