How to help a child with a life changing injury?

[wigglybeezer]

It's me again, it's nearly a month since DS2 injured his arm and so far his nerve damage is not improving much. He basically has no useful function in his right arm.

He has been brilliant up to now but seems to be feeling very tired and a bit irritable now. He can't do most of the things he used to do for fun. I am worried he will get depressed.

I can't seem to find much helpful info online so if anyone knows of an organisation that could help? Would limb loss orgs help someone who has a useless limb?

Hi Wiggly.
My dd2 is 10yo and was born without a hand. We are a member of reach (reach.org.uk) and they are very helpful. Pm me if you want to talk.
Reach is for children with upper arm deficiency. The majority have limb loss in some form, however there are those who have lack of use-one older lady, for example, had polio as a child. They do things like an activity week for over 10yo, and may be able to put you in touch with similar families.

For dd2 there is very little she can't do-the only thing we've found is concert pianost-she plays the trumpet instead.

Thanks DeWee, I will check reach out.
Funny you should mention trumpet, DS2 has played the cello up to now and I have been wondering what to switch him to! trumpet didn't occur to me despite DS3 playing it.

He has cheered up, his onehanded x-box controller arrived in the post!

Dd2 has her right hand to play with, if he's no useful function in his right hand then I think it's French horn for left hand, but there are other possibilities, I think.
However If he has his left arm for fingering it is possible that something can be worked for the cello.
Reach also hire out one handed recorders if he wanted to try that.
Also if he is interested in piano, then there are more pieces written for only left hand than only right hand-I think due to a pianist in WWI who lost his right hand.

Has he been asigned a limb centre? If he has it is worth talking to them, if you get a good one-if you're near London then try Queen Mary's Roehampton. They do tend to work with prosthesis (which will be irrelevant for him, I imagine) but the OTs are usually quite good and inventive at helping for specific things they want to do.

Another organisation he might be interested in is Limbpower. www.limbpower.com They do sporting events, which allow children with limb deficiency to try out different sports, often with very experienced (olympic/paralympic) coaches. Really good opportunity if he's interested in sports. It is meant for amputees, but they may well either be happy for him to join, or know of a similar group that would be appropriate.

For a bike, you can get a device that puts both brake cables into one brake, so he can brake one handed.

You may be able to get lower level DLA for him, which you can use to adapt things like his bike if needed. How old is he?

Lots of useful stuff.

I will get the brass teacher at school to talk to him and he may get enough function back for some kind of adapted bow, we are waiting to see how his nerves recover but I was hoping for more progress by now. Funnily enough my sister has a piano pupil who only uses her left hand due to CP.

I am not sure that I will be able to persuade DS2 to get back on a bike for a while, it was falling off his bike that led to his nasty elbow fracture + complications.

Forgot to say he is 13 and also has Aspergers, I was thinking about DLA as I will be having to buy him various things.

It is much harder to lose the use of the limb than be born without it. But as much as possible let him figure things out for himself, when he's happy to. Generally dd2 comes up with ways I'd never have thought of, but they work well for her.
We do as few adaptions as possible. generally if she can use "normal" stuff then it is better. (one handed x-box is a good idea though)
For example You can get one handed computerkeyboards, we chose not to so we didn't have to get one for school etc. but some children find them very useful.
Reach website does have some gadgets that cane be useful. Dd2 loves the no tieing shoe laces. And at one point the non-slip mat was very useful.

Was he right handed before?

It is very hard to adapt at that age, but I am sure he will get there. The Reach children surprise us again and again with what they can do.

Hi Wiggly. I lost the use of my left hand/arm in an accident 3 1/2 years ago when I sustained multiple fractures, nerve damage (posterior interosseous) and muscle damage due to compartment syndrome following surgery. My wrist is fused, I have no finger movement, no forearm rotation, and an unstable elbow.

But, theres not a lot now that I can't do at all - I've learnt to swim one armed (and am keeping up in the medium lane), can cycle by using a full arm splint and a carefully chosen bike (and next week will sort out having both brake levers on the same side), drive, type pretty fast (a small keyboard is the key), ride horses and jump, run half marathons, and have a full and independent life.

I found there wasn't a huge amount of support for functional limb loss, but if theres anything you'd like to ask I'd be very happy to help

Ds had a similar injury as the result of a broken elbow - it took about a year for his nerves to finally heal. He doesn't have any fingertip sensitivity now, but other than that his hand is fully functional - he plays guitar with no problems now, although his handwriting is shocking.

(Weirdly he still wipes his arse with his left hand....)

His neuro said to expect a year, so be patient!

Thanks for the replies, DS's injuries sound similar to yours CMOT ( and so far he seems to have a similar attitude too) he developed compartment syndrome after surgery and his muscles were damaged and his median nerve badly squashed ( try not to need operations on a bank holiday Sunday night !), his ulnar nerve was also damaged in the original break.

DS is being very philosophical about the whole thing, I am on a roller coaster ride emotionally. The physios are encouraging but his consultant, who is a professor and hand expert, is much more guarded and has told me the worst case scenarios, my mood depends on who I have been talking to. DS also has the scariest looking scar I have ever seen as they couldn't close his wound and had to do a huge skin graft, and yes he is right handed.

It is not quite a month since the accident and some sensation has returned but not much and it seems to have slowed down. His fingers have contracted a bit and his elbow doesn't bend much, all from a slow speed minor fall from his bike on the flat.

I had a late night tearywobble last night, had been keep the stiff upper lip going until DS1 finished his exam revision but DS2 cheered me up.

If some sensation has come back, thats great - it took over a year for my sensory nerve damage to repair.

I have scary scars, and some look frankenstein as the stitches scarred too. They are mostly much better than early on - I was in plaster for 10 weeks initially, and things were pretty horrific when it came off.

Is your ds being seen by a hand specialist physio? What made a huge difference to me was when I went to see a hand guru and his hand specialists made me splints to stop contractures (and stretch what I had), compression gloves to help with the swelling and scarring, and additions to the gloves to make my fingers bend or be supported out as necessary. They had me on about 6 hours a day of physio.
It really is very early days for your ds, so splints and specialist intervention now really has a chance to make a difference to his outcomes.

If you are anywhere near W Sussex, then the care I got from the Queen Victoria team (and if I'd been there to begin with my outcome could have been better) was amazing

We are in Scotland, so he was moved to the regional plastic surgery unit in Glasgow where the prof is a national expert in hand and arm nerves.

We have seen a hand physio and he has a splint to wear at night, there is a bit of a gap between physio appointments ATM as the hospital weren't quick enough off the mark booking him outpatients appointments before he left hospital so I am doing his physio this week and hoping for the best!

I have lowered my expectations for recovery but I would love it if he at least got a pincer grip back! you don't think about how useful opposable thumbs are until they stop working.

Ds wants a robotic exo- skeleton for his hand ( he is a real geek!).

Even a tiny amount of thumb movement is incredibly useful - I don't have a pincer grip at all, but I can press my thumb against my first finger not very strongly and that does a lot.

I'd like an exo skeleton too. I joke with dh that if it wasn't so high risk - as I have CRPS - I'd have my arm amputated and get a cool robotic arm with full wrist swivel and 'accidental' finger extension capability.

Thanks for sharing CMOT, sorry you had such an awful injury.

Hope you didn't fall off a horse, I have just taken up riding again and am in denial about the potential for injury!

Really sorry to hear about your boy's injury. I don't know any organisations but my mum has arthritis in her hand and changing little things around the house really helped, like switching door knobs for handles and the taps on all the sinks to lever ones.

Hi. I damaged the nerve in my arm in an accident 11 years ago, lost all use/feeling from elbow down. I think it was the radial nerve (it was a long time ago and all fairly traumatic, multiple fractures etc, so a lot of the technical terms and finer details passed me by).
We were warned that I'd better get used to writing with me left hand etc etc, I was fitted with a splint so my fingers didn't curl up it whatever. Plastic surgery was discussed, although I was warned it was risky and would have limited impact.
Four months later, the feeling came back. I could feel it before I could move it, but it was there. My medical notes do actually refer to it as miraculous, which I think is a bit much!
Anyway, my point is not to get your hopes up, but more that a month is very early days - I haven't seen you other threads, so I don't know how bad the injuries are, but although my hand and arm have strange patches if numbness and my grip's not what it was, things weren't as bleak as they first seemed.
Sorry to be a bit vague and waffly!

Heavens, it's obviously had a greater impact on my typing than I thought - sorry for typos!

Alas it was a horse, but a stupid fall not doing anything exciting. I managed three separate injuries which are all described as catastrophic in the medical literature when considered on their own. I have come to terms with it all now

Oh dear, as they say you could get run over by a bus. We kept saying to DS after his arm swelled up and got damaged, better his arm than his brain ( and we meant it ).

Ironically DS is a total bookworm and I always thought it would be his brothers who ride or play rugby who would end up in A&E one day.

Sheila, it was a nasty and unusual break and he has a plate on one bone and a pin in the other, it was mostly the post OP swelling that did the damage.

Ah, it was the original injury and fracture that did mine, so my experience probably not all that relevant. My arm was not pinned precisely because of the nerve damage.
Still, a month is early days and I wish you and your son all the best