[tri-med] Re: Input on seizure meds please

I don't have much experience to share but Bec has been started on Topiramate
(Topamax) and within an hour of the first dose her severe headache and face
(and other locations) flareups stopped...something that has made her life
miserable for this past year......she too has started on the lowest (25mg)
once a day for two weeks then twice daily for 2wks then a recheck with the
dr. before any other increase.....the first dose made her sleepy but she
adjusted to that by the third day the biggest side effect for this is that
it is drying her up incredibly quickly so I'm trying to keep her
drinking....not sure I'm keeping up though....we'll see.....so far it is
working on the neurogenic pain events which is a big deal here. Her
behaviour? I am not sure I am seeing an improvement. The neurologist seemed
to have a slew of choices but this is the one we are trying for Bec. He
doesn't seem to think she has MS, another EEG is scheduled but if it is
seizure activity it is some rare sort.......I don't know what to think but
just very glad something is working.

Catherine, mom of Becky (Trisomy 13 Mosaic, 32 yrs old)





-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of plugginalongpv
Sent: Saturday, February 24, 2007 9:48 AM
To: tri-med@xxxxxxxxxxxxx
Cc: Livingwithtrisomy13@xxxxxxxxxxxxxxx
Subject: [tri-med] Input on seizure meds please


Hi Everyone :o)
A dear friend of mine's little boy (Colton) who has T13.has started having
seizures. He's almost 2 years old now. He's on a vent at home and has been
doing very well. Hopefully he will be getting his heart repaired sometime
not too far off.which might mean no more vent :o)

I KNOW I've heard that there are some seizure meds not recommended for the
younger kids.but do not remember what they are??? Can anyone who has
experience with seizure meds email Barbara (Colton's grammy) at
lballard222@xxxxxxx and give her some input.good, bad or cautions would be
appreciated :o) Thanks in advance :o)



Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me
on our trisomy listserv at:

http://www.trisomyonline.org/victor.html

AND...Devon's moment of glory in Exceptional Parent Magazine...

http://www.eparent.com/familiarfaces/ffaces_4_01.htm

AND...see our Trooper on FL Lab Rescue's website at:

http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm

AND http://web.coehs.siu.edu/Grants/TRIS/

"Those who matter don't judge me .... those who judge me don't matter."





                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: