Tourette Syndrome/OCD/ADHD
Jane Pall
with, or suffers themselves from TS. I have an 8 year old daughter who has
TS/OCD/ADHD.
Would anybody like to converse on this subject, or maybe enter a chat room,
I am speaking to many people at the moment in the US but very few people
from the UK - I live in Hertfordshire - would love to hear from others and
exchange ideas - to talk (or scream) and find out how others cope with their
situation.
I would also like others who don't know what TS is become more aware of the
illness as the true stories never seem to come out.
Jane
Sue H
<Ja...@pallisterj.freeserve.co.uk> writes
My 12 year old son has ADHD (and I'm also beginning to wonder whether
there's some ODD involved there too) and I'm also having the same
problem as you in making contact with other parents in the UK. The only
newsgroup I can find is very heavily populated by Americans which is
fine, the support is the same and all that, but their health and
education systems are obviously very different to ours. There are one
or two of us Brits popping in from time to time though. (I'm in Devon
BTW) By all means drop me a line and have a rant - I'll know exactly
where you're coming from!!
TS - Vocal tics? Fortunately my son doesn't have this problem and I can
well understand you wanting to make people more aware of the problem.
OCD - Obsessive Compulsive Disorder?? Again, not a problem for my son.
Regards.....
--
Sue H
ATeasd5941
This is the man you need to contact he runs an amazing site
for ADD/ADHD. He also designs software for the children to
help with their concentration.
sim...@adept.co.uk (Simon Hensby)
My ADD/ADHD site is now at www.adders.org and you
will find Grey Olltwit's Freeware at
Carol T
Jane Pall
only a minor side effect of the whole problem (that statement isn't meant to
belittle the importance of ADHD I do know how difficult it is - but more to
highlight the severity of Tourette Syndrome itself) .
Before my daughter was diagnosed with TS we all had councilling and help for
ADHD - but it was more management control and a very short course of
Ritalin - management control doesn't work with TS because it is an
involuntary muscle movement - they can't help it - they can't stop it - but
they know they are doing it. TS is a very debilitating disease, that if not
understood can cause severe depression, and many children are seen as just
plain naughty (sound familiar) - this is one of the reasons that I feel it
should be spoken about freely.
ADHD/OCD can be part of the whole package of TS - so if anyone out there
feels as I did that "although I knew my daughter had ADHD there was
something not quite right with the diag., it was the nearest thing I had
read to how she was - but there were bits missing - but when I read about TS
it all fitted into place - it was like reading her life history - not just a
diary of the events that happened - I hope this notice isn't too obscure and
I must thank you for replying to my previous message - but I really need to
speak to some UK people about, (I have spoken to many in the US but it isn't
the same as talking to someone who understands our systems) TS as this is
the main illness and the one where no help i.e. schools, education, even
doctors know so little about - but so many children have it - and it isn't
until they get older and reach adulthood they find out. I do hope that it
is OK to sound out like this on this newsgroup - but I don't know where else
to speak from. Please if anybody wants to talk about TS or even the ADHD
then as you can see - I do talk and answer message even if a bit long winded
LOL.
Thanks
Jane
ATeasd5941 wrote in message
<19981211055754...@ngol08.aol.com>...
ATeasd5941
BRITISH TOURETTE SYNDROME 27 MONKTON STREET RYDE ISLE OF WIGHT PO33 2BY
Tourette Syndrome (UK) Association
http://www.wolverhampton.gov.uk/extorgs/wins0831.htm
169 Wickham Street,
Welling
DA16 3BS
Tel: (0181) 316 5558
Support and advice to sufferers and their families. Opening Hours: 6pm
onwards.
~~~~~~~~~
Tree of Hope Tourettes Syndrome Association (TSA)
http://www.connect.org.uk/merseyworld/glaxo/tsa.html
~~~~~~~~~~#
Links to Discussion groups and newsletters
http://www.chebucto.ns.ca/Health/Tourette/info/tslists.html
~~~~~~~~~~~~~~~~
Contact a Family http://www.cafamily.org.uk/ Support and Advice For
Families
~~~~~~~~~~~~~~~~~~
Directory of British Self Help Groups http://www.blackpool.net/www/g-text/
~~~~~~~~~~~~~~~
http://www.chebucto.ns.ca/Health/Tourette/info/homepages.html
~~~~~~~~~~~~~
http://www.ability.org.uk/tourette.html
~~~~~~~~~~~~~~
http://www.kumc.edu/gec/support/tourette.html
~~~~~~~~~~~~~~
Discussion papers
http://www.sagepub.co.uk/journals/details/ab002868.html
http://www.ama-assn.org/sci-pubs/journals/archive/neur/vol_54/no_5/letter_4.htm
~~~~~~~~~~~~~~~~
Neurological newsgroups access
http://www.healthcentre.org.uk/hc/clinic/websites/neuro.htm
~~~~~~~~~~~~~~~~~
Bionet newsgroups
http://www.cov.ac.uk/sandf/library/subject/life_sci/biogrps.htm
~~~~~~~~~~~~~~~~~
BTW Simon is British, and is one of the people I know most
likely to be able to put you in touch with another mother
whose child suffers both syndromes. Don't be bothered by
speaking to American families though if you need to,
the condition is essentially the same all over the World.
~~~~~~~~~~~~~~~~~~~~~
Your other option is to set up a web page and add a notice board.
http://members.tripod.com/%7ejpsp1/sites.html
Directory of sites offering free webspace to charities & non-profit
organisations
Good Luck
Carol T