Joined: 13 Jun 2004 Posts: 3 Location: rockford il.
Turretts Syndrome Posted: 06-17-04 22:28pm
I'm a 45 year old male i've had ts since I
was 6 or 7 years old but it wasnt
diagnosed by a doctor untill I was in my
mid 30's .Its been an up hill battle every
since trying med after med after med.Right
now im taking klonopin it seemed to work
fairly well for about 6 months and then
things took a turn for the worse .It seem
that after suppressing the tics somewhat
for a while the medication isn't working
any more and the tics are worse and more
frequent than before I started taking the
klonopin.I'm wondering if anyone has had a
successful treatment plan I could discuss
with my doctor.I have an appointment with
a pshychiatrist because i've been told
they may have more experience with ts than
even a nurologist.So if anyone has any
suggestions I would be greatful,thank you
|
Gary84
New User, Becoming EHEALTHy
Joined: 07 Nov 2004 Posts: 2 Location: Maryland
Tourette Syndrome Posted: 11-07-04 22:40pm
Hi don...I have tourette syndrome also. I
am 20 years old and have had ts since I
was 5. It started out as motor tics and
now I am vocal. I have had no luck with
any medications. I think I am
finally going to get some relief
though...For once. I am on orap and have
been for a while, I have been on it most
of my life basically. I just recently
added topamax to the orap and I notice
awesome control over the tics, the ability
to hold back and it has taken away or
minimized most of my motor tics such as
spitting and banging my teeth together.
Its tough I know. I have been on pretty
much everything. I have a whole list I
could name for you. I would name them for
you if you want so write back and let me
know. I am only on 50 mg of topamax right
now and 3 mg of orap. Tomorrow I increase
to 100 mg of topamax which is november
8th. I can eventually go up to 400 mg a
day with the topamax. Good luck to you
and its a shame no one has responded to
you except for me. That bites. Take
care. :d
My 10 year old son has turretts and nf
type 1. He hasn't prubity yet but the
doctors say that is when we will see the
true effects of turretts. Right now my
son is only taking sretarra 20mg at night.
I might have missed spelled the name of
the med. He seems to be doing better with
the meds so far. The one thing that I
have notice to help is a strick routine
and his dietary intake. Less suger less
meltdowns and tics. You would be amazed
on the type of kid he is when he is
following his diet and is on his routine.
It is hard to say no to my child you can't
eat this or no you can't have that because
of your turretts but he is much more calm
in the end. Good luck to all.
|
blulyneguy
Experienced User , Rather EHEALTHy
Joined: 09 Jan 2007 Posts: 334 Location: Idaho,
Oh Great! Posted: 02-01-07 10:03am
My son is 7 and takes catapres (1.50 mg)
at night. It really helps him with his
tics during the day. He is very
intelligent (a full grade ahead in
school), going for his 3rd belt in karat
next week, and he plays hockey in a
league. Doing very well. But as he
matures, more "side" issues are coming to
the surface like hyperactivity and
oppositional behavior. He's a great kid
but the hyperness drives me nuts! I try
my best to let him "be a kid" but
sometimes it just overwhelms me and he
gets in trouble for it. I'm working on my
reactions (due to the fact that hes not
doing it on purpose). Getting better at
it.
Now my 3 yr. Old daughter is showing
signs of ts. I hope to god it's only a
"child hood" tic but i'm all too familiar
with the onset of tics. My son had ocd
terribly at age 2! She's not exhibiting
ocd as of yet, but definately eye/facial
tics. Breaks my heart when she says,
"mommy, my eyes are blinking again". I
suffered as a child but back then it was
just "he's a little weird, he'll grow out
of it". Turns out that I did not grow out
of it. I grew into it. See what happens
when my add kicks in?
|
touretteboysmom
New User, Becoming EHEALTHy
Joined: 04 Feb 2008 Posts: 1
Topamax Posted: 02-04-08 13:51pm
My son is 12 y/o and was diagnosed this
past summer with TS. Before that we had
been told that he had simple motor tics
from his pediatrician and he was put on
Orap. When we went to see the neurologist
this summer they changed his medicine to
Clonidine which caused my son to become
depressed. Diehlan is normally a very
happy child, hyper- most definately but
the depression was too much. Our
neurologist wanted to keep him on
Clonidine and wanted him to go see a
psychiatrist. I decided to get a second
opinion, as parents it is our
respponsibility to do that if we feel our
child is not receiving the proper care.
Absolutely love our new neurologist, he
took him off the Clonidine and said there
was no reason to see psych. if it was the
medicine causing depression. He put us on
Topamax, 75 mg a day. Diehlan is really
doing well on new medicine, tics have
almost stopped and we ave not experienced
any major side effects.
I think I am
finally going to get some relief
though...For once. I am on orap and have
been for a while, I have been on it most
of my life basically. I just recently
added topamax to the orap and I notice
awesome control over the tics, the ability
to hold back and it has taken away or
minimized most of my motor tics such as
spitting and banging my teeth together.
Its tough I know. I have been on pretty
much everything. I have a whole list I
could name for you. I would name them for
you if you want so write back and let me
know. I am only on 50 mg of topamax right
now and 3 mg of orap. Tomorrow I increase
to 100 mg of topamax which is november
8th. I can eventually go up to 400 mg a
day with the topamax. Good luck to you
and its a shame no one has responded to
you except for me. That bites. Take
care. :d
