[tri-med] Re: Strattera

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. By the end of the first week I noticed that it seemed
to only 'work' (symptoms started up again) for about 15-20 hours so was
anxious to start the 2 per day.
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.
I also have a tough time figuring out where Bec hurts....she has a problem
locating pain....usually she just gets miserable till I figure it out then
when I show her and tell her why then she's 'got it' and next time she has
the location and words....I'll be praying that you can figure out what Devon
is feeling. Sorry I can't be of more help.
Oh, I really liked the neurologist by the way. He was extremely thorough and
seemed very familiar with most syndromes (though, not with Trisomy 13
Mosaic, but took the time to look it up (unfortunately all he had was
Smith's :( and check Bec out for all of the markers). He also seems intend
on figuring out what is going on and finding solutions. He actually taked to
Bec and got her to answer questions and got her laughing (all in all, hmm a
rare 10:)

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 8:52 AM
To: tri-med@xxxxxxxxxxxxx
Cc: Livingwithtrisomy13@xxxxxxxxxxxxxxx
Subject: [tri-med] Strattera


Hi All :o)
Today is Devon's first day on  one 18mg Strattera. Joe and I have been
reading up on it and as usual we're worried but hopeful :o( It has the same
possible side effects as just about anything we've looked at.heck.even the
same ones as the meds I take! Joe's lost sleep worrying about him.but then
when he talked to me about it the next day he said that "we're pretty good
at recognizing the signs when he's not feeling well, when he's going to toss
his cookies, when he gets unsteadi-ER." the only thing we're worried about
is if he gets a headache.how will we figure that one out?? I figure he'll
get fussy.and maybe quieter.maybe he'll even lay down??? I don't know how to
teach him to show us when he has a headache.how to explain to him what a
headache is??? The Strattera is not supposed to knock him out.it's NOT a
stimulant.and it's supposed to have a calming effect and help with issues
like aggression, etc.

The instructions we have are to give him ONE 18mg Strattera every morning
for 2 weeks. Then up it to TWO 18mg Strattera  every morning for 2 weeks. IF
we like what we're seeing after the second dosage increase.we can hold at
36mg every morning.if not.we're to increase it another 18mg. Obviously.when
we get to a therapeutic dosage, we'll get a script for the proper dosage so
he only has to swallow ONE capsule.

If anyone has some experience with Strattera, we'd like to hear from you :o)
Otherwise.just please send up a small prayer that we'll find the answers for
our silly man, Devon :o)

As a little post script.I gave him his first pill a little less than an hour
ago and he's not asleep with his head drooping or staggering around like a
zombie like what happened with his first dose of Chlonidine (and that was
only HALF of the smallest dose) !!! That's something :o) But we don't expect
to see any real changes for over a week. Hopefully they'll be positive
things????

Take care.



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

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