FAO: Ali Kid Just Diagnosed with ME
Katya Robin
tried to email you off list but it bounced
I can recommend Tymes Trust ( www.youngactiononline.com ) they have
phone helpline.
Jane Colby is extremely helpful.
They have an excellent scheme for members to contact a professional for
advice.
contact details at
http://www.youngactiononline.com/register.htm
I believ Serena has arleady mentioned the YAO chat list ar raising kids.
AYME provide various services, newsletter, etc etc.
BTW both organisations free to join for under 26s.
great Ormond st and ME haven't exactly got the best reputation, don't know
how things are there since the Panorama programme November 1999, hopefully
better !
I am a parent with ME, with 2 kids ( aged 11, + 14 ) who also have the DD.
Personally we find it easier to steer clear of hospitals ;-)
have you looked up the CMO report on CFS/ME
details of where to get it at
http://www.sheffieldmegroup.co.uk/links.htm
hth
-
KR
----- Original Message -----
From: "ali" <alic...@bigmailbox.net>
Newsgroups: uk.people.support.cfs-me
Sent: Friday, February 14, 2003 10:02 AM
Subject: Kid Just Diagnosed with ME
> This is a bit long, so please bear with me? I'm a newbie Mum in all
> this and I need advice please.
>
> My twelve year old son has just been diagnosed with ME. In September
> 2001, he contracted shingles and then encephalitis. He was fine after
> that and then about a year later, what we now know as ME began. He is
> not bed bound, he is fairly active and goes to school for maybe a
> couple of hours each day, sometimes more. Quite often he is
> absolutely fine for months at a time.
>
> The specialist has recommended physio and a psychologist. Sensible I
> thought because my son has received quite a lot of stick down these
> many months as to what really ails him, is he school phobic etc. and
> he needs his confidence rebuilt. Right now, he is in complete denial
> on ME and after what he has been through, totally understandable.
> Whereas for me, I am trying to get an education on this thing.
>
> So subsequent to the diagnosis, I get on the internet to learn more.
> I get on to the ME Association's Listening Ear. I tell the Listening
> Ear that my son and I went rollerblading yesterday - at his request
> and he had a ball - and she was horrified. I then tell her that he
> wants to spend a bit of time on the Peace March in London this
> Saturday and she is seriously appalled.
>
> To keep him active when he is not at school, I suggested that he learn
> website design. He loved that idea, taught himself PHP and HTML and
> now spends ages on creating his website. The Listening Ear told me
> that this was a bad idea as this is too tiring.
>
> So what I am supposed to do with my son. Keep him in bed doing
> nothing?? Where is the rule book for this thing?
>
> On the internet, I discover comments such as: "... most likely, you
> will end up with the one speciality which, though wrapped up in
> pseudo-scientific jargon, requires no scientific proof whatsoever to
> 'prove' its cause. It is the dustbin of modern medicine. It is, of
> course, psychiatry... Here are people with the power to decide that a
> child with M.E. "doesn't want to get well" or "is overly-dependent on
> his mother and is trying to maintain her affection by staying ill".
> The Orwellian overtones of these sorts of pronouncements takes one's
> breath away." Christ! Do I agree to having him seen by a
> psychologist if this is the result?
>
> Folks I am really confused and would welcome some pointers from people
> on the best way to proceed.
>
> TIA
>
> ali
ali
wrote:
Hi Katya
Thanks very much for that. Much appreciated. I would *very* much
like to see the Panorama prgramme. Very much indeed. Any ideas where
I can get hold of a copy?
My email address is active and I would really like to hear from you.
You have two kids my son's age and if you don't find it too tiring,
please could we correspond?
I will email you my details. Thanks very much.
ali
Katya Robin
"ali" <alic...@bigmailbox.net> wrote in message
news:o4455v05gpefdh8k6...@4ax.com...
> On Tue, 18 Feb 2003 17:33:50 -0000, "Katya Robin" <k...@blue-kat.co.uk>
> wrote:
> Thanks very much for that. Much appreciated. I would *very* much
> like to see the Panorama prgramme. Very much indeed. Any ideas where
> I can get hold of a copy?
see
http://news.bbc.co.uk/1/hi/audiovideo/programmes/panorama/archive/506549.stm
might be worth trying local ME groups and Tymes Trust or AYME in case they
have a vid in their libraries?
don't think we have it anymore, it was a subject we wanted to get as far
away as possible from !
more detailed reply by email
-
KR
ali
wrote:
>
>"ali" <alic...@bigmailbox.net> wrote in message
>news:o4455v05gpefdh8k6...@4ax.com...
>> On Tue, 18 Feb 2003 17:33:50 -0000, "Katya Robin" <k...@blue-kat.co.uk>
>> wrote:
>> Thanks very much for that. Much appreciated. I would *very* much
>> like to see the Panorama prgramme. Very much indeed. Any ideas where
>> I can get hold of a copy?
>
>see
>http://news.bbc.co.uk/1/hi/audiovideo/programmes/panorama/archive/506549.stm
>
>might be worth trying local ME groups and Tymes Trust or AYME in case they
>have a vid in their libraries?
>
>don't think we have it anymore, it was a subject we wanted to get as far
>away as possible from !
>
>more detailed reply by email
>-
>KR
KR - I have found a transcript of the programme on the BBC website. I
can barely type for the tears. Christ! What are they planning for my
son?
I have emailed the Consultant at Great Ormond Street and attached the
transcript of the Panorama programme. I have told him that I will not
accept any referrals for psychiatry or for physiotherapy and that if
he wishes to refer Ben to the Child Protection Unit because I will not
accept this barbaric orthodox medical treatment, then he will be
hearing from my solicitor. I don't care if I have gone too far. I
won't let them do this to him. But worse for us, I am afraid that I
am beginning to panic a bit. These people scare me badly.
ali
Alan Teeder
"Katya Robin" <k...@blue-kat.co.uk> wrote in message
news:b2u8jc$1g9k25$1...@ID-65542.news.dfncis.de...
>>
> see
>
http://news.bbc.co.uk/1/hi/audiovideo/programmes/panorama/archive/506549.stm
>
> might be worth trying local ME groups and Tymes Trust or AYME in case
they
> have a vid in their libraries?
>
> don't think we have it anymore, it was a subject we wanted to get as far
> away as possible from !
>
> more detailed reply by email
> -
> KR
Katya
Good to see you posting here again.
Hope you are OK(ish??)
Alan
Katya Robin
> On Tue, 18 Feb 2003 21:28:29 -0000, "Katya Robin" <k...@blue-kat.co.uk>
> wrote:
>
> >
> >"ali" <alic...@bigmailbox.net> wrote in message
> >news:o4455v05gpefdh8k6...@4ax.com...
> >> On Tue, 18 Feb 2003 17:33:50 -0000, "Katya Robin" <k...@blue-kat.co.uk>
> >> wrote:
>
m
>
> KR - I have found a transcript of the programme on the BBC website. I
> can barely type for the tears. Christ! What are they planning for my
> son?
>
> ...Great Ormond Street ..... I have told him that I will not
> accept any referrals for psychiatry or for physiotherapy ....These people
scare me badly.
please don't be frightened, things have changed so much since the 'bad old
days', especially since the child b case referred to in the Panorama
prog.and of course the CMO report.
-
KR