[tri-med] Re: any ideas

Hi Thea :o)
Devon used to fall asleep between 4 and 5 pm. People were always telling
me..."KEEP HIM AWAKE! Just don't let him fall asleep until you're ready". I
got so frustrated and tried to tell them that I could put a grenade in his
diaper and it would keep him awake when he's ready to go to sleep!!! Now
he'll stay up until 6:30-7PM...sometimes a little later. But we DO make him
rest and be calm...no getting wound up!! If I try to actually get him in his
bed when he first falls asleep or put him in there to actually go to
sleep...IT AIN'T GOING TO HAPPEN!! And before we got his Vail bed (enclosed
bed)...if he could hear anything else in the house...any life
whatsoever...he would get up and wander in to the couch and crawl up and lay
down without ever opening his eyes :o) One of the perks of being legally
blind I tell people (but then I have a warped sense of humor). 
The jury's still out on if the Strattera is working...too soon to tell
because the dose that he started on a week ago is probably close to a
therapeutic dosage...but it's only been a week. We DO notice more
vocalizing...more sitting and being calm. He has not lost his appetite or
been any more emotional than normal and best of all he hasn't lost his
sparkle and sense of humor...sorry to say he has my warped sense of humor
:o) He's silly as ever too :o) The thing with the Adderall XR is that it's
stimulant and that's why it works well for many with ADHD or ADD. I found it
interesting that in people with ADD or ADHD, a stimulant actually works the
opposite on them. With Devon it amplified everything...it was AWFUL! The
Chlonidine didn't calm him...it just about put him in a coma (not
really...it just knocked him out...which wasn't what we wanted it for). And
the Chlonidine also scared us because of how it messes with blood
pressure...and Devon's very hard to monitor that way. But Devon does not
have ADHD or ADD...his hyperactivity (or busy-ness...I've always called him
busy too) is caused by his syndrome and most likely something with his brain
chemistry. The Strattera is supposed to have a calming effect and is NOT a
stimulant...and it can promote focus and slow some people down. We're all
for that as long as we don't lose what makes Devon...Devon. His silliness,
his sparkle...his rotten streak :o)

I'd like to hear more about the testing the brain chemicals...what's
involved etc.


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

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