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Cerebral Palsy
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userSyd
Posted: 29 May 2007 12:35 AM
Subject: Cerebral Palsy
 


Sorry to concern you all with my private life but I have a son with Cerebal Palsy.
He will be 21 years of age in a couple of days.
He is becoming depressed at being unable to do anything for himself and being in a wheelchair

Im telling you this because I'm excited, I have just found out about a new treatment that claims to greatly help sufferers of this blight.

The treatment is carried out in China, yes I know, it's China, and I am trying to be cautious but Im excited and because of this my judgement may become impaired.

Who will volunteer to bring me back to earth with some sober advice as none is freely available in the circles in wich I move.

The treatment can be viewed at

http://www.daifumd.com/_daifumd/dochome/html/284/index.html

I would willingly jump into my grave tomorrow if this would work. what do you think ?? Be honest, you wont hurt my feelings
userhowie
Posted: 29 May 2007 1:01 AM
Subject: RE: Cerebral Palsy
 


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Location: Dunnshargin


It all sounds very promising Syd and you have to follow it up. Advancements using stem cells have come on leaps and bounds over the last few years, and though caution against the high possibility of disappointment should be taken, lets hope there is something to be gained for your son.
Perhaps advice from your Docter or Specialist on this matter should be your first step on whether this is a viable option. All the best mate, and we are all behind you.
userRandonneur
Posted: 29 May 2007 8:12 AM
Subject: RE: Cerebral Palsy
 


Forum master

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I take a very keen interest in stem cell research as I have leukaemia. If my recollection is right I am sure I heard a someone using Botox on a child with cerebral Palsy about 2 years ago, this was done on a regular basis and stopped the child from being confined to a chair as it released the tendons, I think, that were being pulled tight. You probably know about this. But I just thought someone else might be interested.

sylvia
userSyd
Posted: 29 May 2007 8:34 AM
Subject: RE: Cerebral Palsy
 


Thank you both for taking the trouble to reply so quickly, Im grateful, yes caution has to be the watch word at all times when it comes to all medicines.

We do know about botox (botulinum) but I realise that while the botox is greatly diluted it remains a very toxic product so although I know of no one suffering any serious after effects we have not gone down that route because of it's toxicity. It deadens the nerve ends for from 3 weeks to about 12 weeks thus it stops much of the spasticity for that period of time and then the treatment has to be repeated, I understand that it can be VERY painful.

I do have contact with a doctor in Moscow who I think I can trust and here is his first comments on the subject received this morning

"Regarding that Chinese clinic.
Hard to say anything. Stem sell treatment of cerebral palsy is still a very controversial one, no significant data is available. All that on a page, including patients' experience refers to problems, different from ones Lee experiences. Not a single mention about real relaxing effect. Sorry, but that is all I got from the page. Multyprofile clinic with a mixture of medical aid offers.Most of them - mainstream ones, wrapped in semi-exotic expressions. Looks more like a money trap for the western patients..."

A bit of a dispointment really but he is a very clever doctor. His speciality is Amino Acids wich does have some startling effects on many illnesses including Cerebral Palsy. The products can be bought in any health shop if you know wich ones to get. I can personally vouch for his great skill.

Not given up and will persue it further,
Thanks again, I am most grateful
userCliveH
Posted: 29 May 2007 9:13 AM
Subject: RE: Cerebral Palsy
 
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Syd

Very sorry to hear of your sons condition - however, I would be very careful in dealing with the medical "profession" in China. Medics over here and elsewhere are bemused and astonished by what goes for normal practice in China.

Sadly a lot of the "cures" offered are more about attracting your money rather than anything else.

Have a look at the following link to get a flavour of what goes on.


http://www.buyhard.fsnet.co.uk/other_human_rights_abuses.htm


R


Clive
userSyd
Posted: 29 May 2007 10:23 AM
Subject: RE: Cerebral Palsy
 


Clive
Thanks, yes I am aware of these things happening over there.
It is a very disturbing matter

I have many concerns about the ethics involved and have weighed them against the problems that I face at home too.
At the moment Im unsure if this procedure that I am interested in will come under the article that you mention or not, then I think, If it does, should I take advantage of it anyway because if I don't the practice , with or without my participation, will still continue and although I don't like it I will have passed up the chance that I can finally do something to help the most important person in my life.

It is a dilema that takes on a different hue when you become so personally involved as to the effects your decision could have on a loved ones life rather than from taking a moral non-personalised standpoint.

Maybe we should discuss the ethics side of this subject a bit further ??
At the moment if I thought that my sons condition would show considerable improvement from this treatment then I think I would go for it and be damned, but I am not sure
usermark lambert
Posted: 29 May 2007 7:03 PM
Subject: RE: Cerebral Palsy
 
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Hello Syd
To a degree i know how you feel, i have a 17yr old son with cerebral palsy it is only mild so he doesn't need a wheelchair, when we were told he had this condition we were devastated as no doubt you were when you were told, luckily for nathan it wasn't as bad as we first thought and he manages very well, although it was very difficult when he was a toddler, for him and us. I hope and pray that in the not to distant future there will be a cure or atleast something to help all sufferers of the condition. I'm sorry i haven't been any help to you in your query, i just thought i would offer you some support from somebody who knows what you are going through. Be careful, do all the research you can and talk to all the experts you can, other than that, good luck buddy and give your son a big bear hug from me.
mark
userLizzy
Posted: 30 May 2007 6:08 PM
Subject: RE: Cerebral Palsy
 
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Location: Northamptonshire England


Surely there is an Internet forum for people with this condition to prevent them feeling so isolated? My neighbour's son goes for brain physio at Oxford on a regular basis, he is improving a lot. He's 13.

Beware of things Chinese ......

do lots of research, go to Conferences before committing, get Abstracts and Papers that are Peer-reviewed. Discuss, discuss, discuss .........

Some people have to be guinea pigs but it's such a long way to go; expensive and you could feel isolated especially if things are not explained clearly enough.

Is your son's depression being treated?
userSyd
Posted: 31 May 2007 12:11 AM
Subject: RE: Cerebral Palsy
 


Lizzy - 2007-05-30 6:08 PM

Beware of things Chinese ......

do lots of research, go to Conferences before committing, get Abstracts and Papers that are Peer-reviewed. Discuss, discuss, discuss .........

Some people have to be guinea pigs but it's such a long way to go; expensive and you could feel isolated especially if things are not explained clearly enough.

Is your son's depression being treated?


Hi Lizzy
I don't think he is depressed as badly as that but never-the-less he is down and we notice it. We are hoping it is just a passing phase.
He just want's to walk and he cannot and is unlikely to.

We have a lady carer who takes him shopping into Sunderland two or three mornings a week and to the local shops the other days and we have a private teacher every afternoon so he is kept well occupied throughout the day and of course in the evenings/weekends we occupy him or he has his computer on.

The Chinese thing is beginning to look less like it will be for him every time I do more research which is a pity, because I thought ------------- .
userLizzy
Posted: 31 May 2007 1:34 PM
Subject: RE: Cerebral Palsy
 
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Location: Northamptonshire England


Being 'down' can lead to depression whcih if left can take longer to respond to medication/therapy. A short courst - 3-6 months - of ADs might lift his mood. At 21 we all want to be like our peer group, out and about ........ as we grow older it doesn't matter quite as much ....... I'm glad he has a carer who can take him shopping, what are his interests?
userSyd
Posted: 31 May 2007 6:03 PM
Subject: RE: Cerebral Palsy
 


Hi Lizzy
Lee loves motorsport and we often go to meetings together.
He loves 10 pin bowling, we play three games every Sunday evening (Im not allowed to win) so I get humilliated every week.
After our games we go to the local for a quick half or two and all the blokes there take the score sheet printout from him and proceed to take the mickey out of me, he just loves that plus the barmaid flirts with him and he certainly loves that.
userMel B
Posted: 31 May 2007 9:12 PM
Subject: RE: Cerebral Palsy
 


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Wasn't there a programme/documentary last year about this treatment? I seem to recall that someone paid an awful lot of money and went through a lot of hard work etc to get some treatment for her son but unfortunately despite all of that nothing came of it, real shame as they didn't have the money to waste. Can't remember much more though, sorry.
userLizzy
Posted: 1 June 2007 12:15 PM
Subject: RE: Cerebral Palsy
 
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Location: Northamptonshire England


We live not far from Silverstone and when we were courting many years ago Hubby and I followed small oval Speedeworth stockcar racing: we were 'fen tigers' in the days when Derek Warwick raced.

Now we like to watch Superbikes etc. though since my heavy fall in April I can't look when they take a bum-to-the ground ride down the track!

Haven't been 10 pin bowling - yet

Music is also a good relaxation therapy and many people with disabilities enjoy going to workshops. Theatre groups have also begun to incorporate those who need help, i.e. and the name escapes me ........ oh Chicken Shack I think is the name. A friend of ours plays the fiddle [rather well!] and has done 'special needs' classes which gives both him and the students a lot of pleasure.

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