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

Hey everyone

So we're on the ward. We were moved here at about 2am this morning. Finally got to sleep at about 4am!

I had to rush home this morning, shower and feed our poor dcat who has no idea why shes been left on her own. Then run to lidl. Which took bloody ages. Poor dd was awake in the room with the nurses by the time i got back. Luckily she is quite chill, honestly.

We saw a lovely doctor this morning when I got back, who said she doesnt think cancer right now. She thinks that rather than dd being in pain, she is weak.

Dd has been able to take steps around the flat at home and roll around. But just cant walk without sitting down.

So theyre looking for things that could cause weakness. She had a chest xray and is having bloods taken.

She is still not eating or drinking, so is reliant on the drip. Theyre talking about tube feeding her 🥺🥺, no idea how they'll get that done, no way will she sit still while a tube goes down her throat.

She might have another mri so they might sedate her and do it then, the doctor said. All possibilities at this point though.

So now, no food (I've offered her a pot noodle, which she randomly now loves, donuts from lidl, fruit shoot, lollipops - nothing) she wont drink but doesnt seem too out of it like she did yesterday.

They said it was the right thing to bring her in, which was nice to hear.

Thats it. So we are here for another night. Theyre doing urine samples and checking her ketosis levels due to lack of food.

She doesnt get this not being able to eat thing from her mother, honestly!! Never known anything like it in my life 😭

Anyway, thanks always and I will update when I have more news. The school will be pleased, more time off!!

❤️❤️

Thanks for the update, OP. Thinking of you loads. Do you have any support IRL? This is so gruelling and relentless for you right now. Fingers crossed the cause is close to being found and easily fixed once ascertained.

Thank you @Dery 🥺❤️

Its just me, dd and dcat - noone to turn to irl but honestly, its okay. Its tough ofc but ive been praying and just trying to get through each day

Right now its trying to get dd to eat so she doesnt have to be tube fed 🥺❤️

Yes fingers crossed for an answer

Sorry to read your updates, OP. Just want to send best wishes and hugs to you and DD. Hope you both have a decent night's sleep, and get some answers very soon

So sorry you are still no further on with getting answers OP.

When my DC had to have MRIs as a baby the hospital gave a general anaesthetic— I wonder if you could ask if this is a possibility. At least they’d get the procedure done then.

Prayers for you. You’re such a lovely mummy, lucky DD to have you.

Your local church community may be able to help with things like feeding the cat. If you email the parish office they can send someone out to your house for a pastoral visit where you can talk through all your issues and ask for support. Sometimes we need more than just prayers and my local church is always very practical with things like this.

Failing that perhaps you can give a key to a neighbour and ask them to feed the cat and put the wheelie bin out while you're at the hospital. X

DD JUST ATE SOME OATMEAL!!!!!!!

AND SOME OF A CUPCAKE

still only sipping her fruit shoot though

AND THE BRAIN MRI CAME BACK AS SHOWING NOTHING WRONG! I THOUGHT MY NEXT UPDATE WOULD BE THE C WORD

Thank you for this suggestion xx

I need to get a key cut and give it to my downstairs neighbour

Thank you 🥺❤️

Thank you ❤️❤️

This sounds like some sort of mitochondrial disorder. Please don't get too scared...there is a wide spectrum of disorders and many are very treatable.

My DS has mitochondrial disease and has had some of the symptoms you are describing. Some days he can ride his skateboard around all day and some days/weeks he just sleeps for 21 hours a day. The basic concept is that his mitochondria aren't functioning well enough to power his body all the time, so if there is something else going on like a growth spurt, or recovering from a cold/covid the rest of his body shuts down while the little energy he has is used on that thing. (Anesthetic not behaving normally (and wearing off early) is a common symptom and there is a huge overlap with autism.) DS was 11 before he was finally diagnosed. Before that there was a lot of head scratching by doctors and blaming of me for causing symptoms. Once he was diagnosed (we also had some genetic testing done) DS was put on a cocktail of supplements that really helped enormously. We are in the US now, but here's a link to some UK resources for Mitochondrial Disorders: https://mitochondrialdisease.nhs.uk/patient-area/useful-links/

DS saw this doctor in Los Angeles who was enormously helpful.

Will ask the doctor about this xx

So dd has had some fruit shoot this morning. Literally the doctor was telling us that dd needed to be tube fed if she wasnt drinking

I said this cant carry on, and as soon as she left, I held dd and fed her the fruit shoot like a baby, which she gulped down

They said that the not eating ir drinking in response to the many rounds of sedation is normal

They still think its behavioural and that she is just not happy about something

I dunno

I just wanna get us home. Ive got some plans for a routine at home which focuses on babying dd a little - maybe she needs to feel more safe and loved by me 🥺🥺🤷‍♀️

Its just us two and ive been so stressed and busy, so it could have upset her 🥺🥺

Edit, we are back at hospital after going home on home leave last night xx

sounds very tough OP I really feel for you. I suppose its good that the drs dont think anything is physically wrong but that doesnt really help you right now. Have they mentioned any kind of therapy? Perhaps that's what she needs if it is a behavioural thing.

The fact that she is eating and drinking a bit more can only be positive though

Dd and I are home 🥰

She is eating homemade biscuits right now and drinking her fruit shoot happily, although no squash

We got discharged yesterday which took forever. She slept well and woke up at 8 with me. No school but back for monday

So the hospital think that she is making a choice not to walk. She doesnt seem in pain when she takes steps at home, and she was able to walk from the bed to the toilet at the hospital which the nurses saw

So its up to me to make her feel happy and content to walk 🤷‍♀️

My focus is returning to her routine, and making sure she is comfortable using the proloquo2go tablet to communicate with me

I am worried that she was being told off for not walking at school so will tell them that my plan is just to ignore the not walking completely

It shouldn't have gone this far tbh, with all the tests and panic. Hindsight is wonderful though

I will keep on praising walking and playing with mummy, as well as following home rules

I am working on how to treat her, and feel that she is really thinking lots now and is better able to deal with the world outside of our autism bubble. I do have another thread so just taking advice on there and taking it day by day

Lots of love and cuddles atm though, and a little relaxation in front of The Chase.

And we put the xmas tree up!!

Thanks everyone. If there are more updates i will share. But I am grateful for your prayers which I think kept her safe when she was poorly and with the results from the tests

❤️

That’s positive OP. One step (literally) at a time!