Botox In Arm/ Hand
Posted 15 February 2004 - 11:06 PM
Posted 04 March 2004 - 12:49 PM
I can't offer you our experience yet, sorry. My son, who is 3 in May, is going to be assessed for botox in his hand/arm mainly because I am pushing for it. The chances of it being used are slim I am told, but at least he is being assessed (Gt Ormond Street Hosp). I would like to know what your experience of the assessment procedure has been and how would you describe your son's arm/hand. ie. is he permanently 'fisted' or does he alternate between relaxed and 'fisted'?.
Posted 04 March 2004 - 08:53 PM
Matthew received his assessment at St George's Hospital (tooting) - the botox clinic there seems to be run by a plastic surgeon (Mr Gately) in conjunction with the physiotherapists from the CDC. Anyway, the assessment was quite straight forward. Firstly they asked for a background of what happened to Matthew that might have caused his hemiplegia (basically nobody knows). Then they examined him (very unintrusive). Matthew's arm/ hand are more affected than his leg.
Basically, he tends to keep his hand fisted and the arm bent at the elbow. However, he can reach with his arm and when concentrating/ prompted does attempt to use his hand - both by opening it and as a "prop". He can for example take an object with his good hand and put it into his weak hand. Gradually over the last 3 years he has become more aware of his left arm (when he was very little it did not move at all). I think that one of the things that they were looking for was whether he had the cognitive skills to try and use his left side (I think?). Anyway, his main difficulties arise out the fact that his thumb is very turned in, he finds it hard to fully open his fingers and practically impossible to turn his hand (ie he can not turn his hand so that his palm is facing upwards) This last thing is what I really wanted them to try and tackle since it is very limiting. He also has a very weak grip.
The surgeon and the physio discussed his suitability for the treatment on the spot and gave me an answer right away - I don't really know on what criteria they judge suitability. They intend (i think) to inject 2 muscles in the thumb, one that controls the fingers and one that controls the turning of the hand. They explained that they would rather do fewer muscles at first in order to work out which are the muscles that are too tight (ie by a process of elimination).
The cons against the proceedure as I understood are:
- they might have identified the wrong muscles
- they might inject the wrong muscles (since childrens muscles are so small)
- they might get the dosage wrong (hand becomes too relaxed)
- it does not work well for him
I wonder why they think that you are unlikely to be accepted for treatment? When you go for an assessment ask them what they are looking for ... if your child gets turned down it is probably a good idea to find out exactly why (they may well be right of course)
Matthew is booked in for the 5th of April and I will keep you posted as to how it has gone. Good luck at St Ormonds st and I would be really interested to know how it went
Posted 22 April 2004 - 03:46 PM
My daughter, Isabel, saw Mr Gateley at St George's today, and might well have an appt for mid May. How did you find the therapy on April 5th? Was it worth it? We are really keen and have said we will go ahead, but I suppose I am just looking for a tiny piece of reassurance!!!
Posted 12 July 2004 - 10:24 PM
So I will obviously be seeking some info on experiences and posting ours when it is done.
Arabella your child's problems sound almost identical to my sons in relation to his arm/hand. Tim had a stroke when he was two years old and he is now almost 9.
Posted 03 April 2006 - 12:03 PM
It's been a long time since we discussed Botox. My son hasn't had an assessment yet as that dept of Gt Ormond St ceased. They suggested to local Paediatrician that he was referred to Cambridge, but since then other things have taken priority and we still haven't gone down that route. I think the main reason it hasn't been pressing is because Alex's condition is mainly dystonic - which I believe means he stretches and flexes, so there is some movement in his limbs.
Anyway, would love to hear from you about your experience with botox in the last couple of years.
Posted 09 May 2006 - 08:06 PM
We have found the treatment very useful particularly on his leg. This has helped to relax the tight muscles, build up the ones that never get the exercise before the tightness starts to return (normally about three months). This results in more heel strike, more flexibility and a better walk. Less success with the hand although he has no dexterity, thumb across palm and can only move the arm from his shoulder. However, cosmetically it looks better (more of a natural loose position) and it helps to keep all the joints in working order. He is normally under general anesthetic for 30 mins (so the risk is even less) and they use a needle with a small current to ensure they get the correct muscles (they can make the muscle twitch).
He takes it all in his stride and never ceases to amaze me when dealing with the hospital. He has now asked that I do not tell him until the morning of the op otherwise he tends to worry and his behaviour deteriorates in the weeks prior to the appointment. The most recent lot went well in April. Jake seemed very happy all day at the hospital but it turns out that this was because he knew we would be going to Pizza Hut via Toys R Us when he was discharged "cos thats what happened last time"!
From our point of view it is certainly worth a try. The worst part is when they administer the anesthetic but as a parent I don't think I will ever find that any easier.
Posted 10 May 2006 - 06:47 PM
We still haven't gone down that route, but I am almost there with the Saeboflex arm. It has been advertised in the newsletter. It won't be suitable for all, but then neither will botox. We can but try various things to help our little ones.
Posted 14 May 2006 - 12:54 PM
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