Oh God - broken leg is sending DS2 up the wall. Help!!!

[sphil]

As some of you know, DS2(6 with ASD) broke his leg three (long long) weeks ago. At the beginning it was OK, but as time has gone on he seems more and more affected by being inactive. It seems to have sent his sensory system out of kilter - he is very shouty and flappy, with lots of involuntary noises, and VERY demanding, especially of our attention. Asks for 'big hugs' all the time, then pushes us away, and is eating constantly. Night times are the worst - he wakes at 2 or 3am for about 2-3 hours, whooping, shrieking, bouncing and banging on the wall- last night he didn't go back to sleep at all. Dh and I are having to sleep with him on alternate nights to make sure he doesn't try to get out of bed. As a result we're both on our knees and it's the holidays! Next week Dh has to go back to work - aaaarrrgghh.

We have tried restricting TV and computer, cutting down on sugar and taking him out for walks in the wheelchair, but can't take him out for too long in this weather as freezing air brings on his asthma. All these things work, a bit, but I wondered if anyone had any other ideas?

I realise that some of you cope with this - and worse - all the time and know that I'm being a bit weedy, but honestly, I'd forgotten what sleep deprivation is like. It takes me back to the time when he was first diagnosed and before we removed gluten.
Three weeks to go................

Not much help but I will say this: poor kid! Bad enough for a 6yo to be inactive but with an ASD too! Have the hospital not given him crutches, or a walking frame so he can get about at all?

Is it the lack of exercise, do you think? (dd1 would go loopy after about an hour of not being active). Could you organise some throwing games from his sofa/bed? things like cushions/wheatbags (trying to think of slightly heavier things so that he gets a little worn out, but appreciate you might not want to start him doing things like that!)

ditoo skittles/bowling stuff. at least it gets him using his upper body a bit?

if that is part of the problem, you can get resistant stretchy plastic (like huge elastic band stuff), from OT/physio, for building up strength/resistence - could/would he stretch/fiddle with that - he could wrap it around an arm/leg of a chair and pull away?

I sympathise - since beginning toilet training it feels as though we have been marooned in the house forever... dd1 is getting cabin fever (not to mention me!)

no advise im afraid my ds has just been ill and his sensory problems drove me mad if i whispered he'd scream stop shouting with hand over ears rocking etc

its sad as they are out of there normal comfort zone and routine

my heart goes out to you both hope he manages to settle soon xx

I know just how you feel DS (asd with severe behavioral and developmental difficulties) who is 10 in February broke his ankle in November. Unfortunately for him it was the growth plate that he broke. If it doesn't heal properly then his foot could turn in as it grows and he would need operations to fix it. The prevention for this is non-weight bearing and keep as still as possible.

The first week he was ok then he went back to school and they were really good about keeping him in his wheelchair, Then holidays, these coincided with him being totally bored by the whole thing and he has spent 2 weeks now trying to push the pot off.
We have given up trying to stop him walk on it as it was winding him up and he was lashing out at us, or worse still bashing the pot on the ground. He will hop most of the time but has resorted to a kind of slide. The pot is cracked at the heel from bashing and cracked round the top from him putting his hand down it.

Ironically night time is the easiest for us as when he finally goes to sleep he lays stock still.

Did you find that the hospitals are really inequipped to deal with patients with ASD?
Would it be too much to ask for them to push them to the front of the queue. We had to wait 3 hours for our 2nd x-ray to check the bone was starting to heal. He was going out of his mind and when they finally x-rayed him he wouldn't stay still.

Regarding crutches, for us that would mean ds now has 4 foot long arms to hit us with

The pot comes off next week and we can't wait. All in all the 6 weeks has gone past pretty well so chin up and you will get through the next few weeks

Debs - we were lucky with hospital - seen very quickly and I suspect we were fast tracked through. Should be done everywhere though.

Those ideas for upper body workouts are really good - thanks. He's not usually interested in throwing at all, but did play a throwing game with me the other day - poor boy, he's desperate to do anything to relieve the boredom! Has even played with his Christmas presents - it's normally at least Feb before he'll have anything to do with them.

might be way off the mark, but would some kind of massage help if he's getting uncomfortable? perhaps before bedtime to help with the sleeping? you must all be absolutely exhausted.

debs - the end is in sight! remember, getting the cast off can be quite traumatic. ds went into complete meltdown. once it is off though, you can have a big celebration.

We're taking ear defenders with us when DS2 has his cast off.

RR -I've tried deep pressure massage on him - he usually likes it but is shrugging it off atm. It's as if he's seeking out certain sensations - but then they're too much for him iyswim. As if he's swinging wildly from being under-reactive to over reactive.

The hospital has said they can sedate him to take the cast off as they use an osciallating saw
Not looking forward to it.
Am looking forward to giving him a bath and haircut, he is starting to whiff

Yes same here - the whiffiness I mean. We tried one of those inflatable cast cover jobbies - never again. Think wet plaster, which kept seeping into the bed all night. Three changes of pyjama bottoms later I went to get into bed and found that he'd moved over into mine and leaked all over that too.

Sphil I am so sorry for you and Ds2. I am tearing my hair out here trying to keep Ds2 amused and he doesn't have a broken leg.

Wondered if you have a playground with a wheelchair swing near you that you could take him to? Might help with the sensory stuff. Could you get him to a soft play area and put him in the ball pit, probably too stressful to be worthwhile, but Ds2 seems to find lying in the ball pit similar to lying in water and it relaxes him. Possibly brushing instead of deep massage? I'm sure you have already thought of sensory type activities like playdough, cornflour and water.

Sorry if these are all rubbish suggestions, trying to think of something to help, but I am aware that you have probably been through every scenario in the book already.

No - good suggestions Have never heard of a wheelchair swing but can ask around. I think he would get agitated in a soft play area because he's so immobile - can't get away from other kids when he needs to!

oh dear best wishes to you sphil and debs for getting back to normal soon with your lads, sounds terribly frustrating all round.

sphil - some playgrounds also have accessible swings - in that they have very big seats with a proper back and a harness - could ds be lifted into one?

He's a bit scared of swings tbh - fell off one in my parents' garden two years ago and hasn't been keen since.

Can't wait ds has pot off tomorrow in 20 hours and 8 mins (well till appointment time). The end is in sight. Sphil your time will come. Will let you know how bad it goes

Good luck Debs and miniDebs! I honestly cannot wait for the next 15 days to be over. Tonight Ds2 has taken his nappy off three times, wet the bed twice and lobbed poo on the floor once. We normally put all-in-ones on him, but obviously can't over the cast.He is more hyper than he has ever been - laughing maniacally, bouncing on the bed and shrieking like a banshee. DH is away. DS1 has just come down having spilt a whole bottle of water in his bed. He is now in my bed. MIL is hovering saying 'Can I do anything?' every two seconds and not actually DOING anything.

I need wine.

Poor sphil the end is in sight.
Today went like clockwork. Me and dh were panicking a little but we needn't have bothered. The nurse put billy on a bed and raised it up, which he thought was great, then she showed him the saw and he let her run it over his hand to see it wouldn't hurt.
Then she started sawing and billy was transfixed, actualkly smiling whils she did it. Not sure if it was just relief or not but he was really calm and sat great throughout.
One tip, the blades get hot and when they do the 2nd side he may feel the heat, billy didn't like that. he also tried to rip the pot off before she had finished.
Now when thje pot is off you will notice his leg is very scaly andf dry. billy scratched the dead skin off so take wipes to 'wash' the rough bits. Oh and it will stink!!! DD1 said he smelt of mouldy cheese.
When we left hospital he was very reluctant to put weight on his foot and has hopped around all day. he did however enjoy a long bubble bath and has clean hair again.

Thanks for that Debs - very reassuring! I can't wait! Good tip about the wipes. I hope DS2 is Ok about putting weight on his foot as he can't hop!

Well done Billy

Hi Sphil just to let you know Billy has now started walking on his leg, albeit with a limp. You can see the muscle has shrunk so will need a lot of buuilding up. Once he had got over the initial shock of walking again he was fine and is running around like a hefalump.

Oh thanks for updating Debs. Good to know he's on two feet again . A week to go for us!