[tri-med] Re: Sleeping Issues

Hi Dori :o)

You could be writing about our Devon! I don't think Devon ever slept much
more that 3 or 4 hours at a time when he was a baby and young boy. He would
sleep for 2 hours here and an hour and a half there usually with bouts of
crying or playing in between. Joe and I took turns but both of us were sleep
deprived for a very long time :o( Devon will be 12 years old next month and
I don't think we started getting any sleep until he was 7 yrs old??? I hate
to tell you this but Devon is STILL very busy/on the go :o) With Devon being
visually impaired, he takes his sleep cues from any kind of light (natural
or artificial). Thanks to Karen sending us a study about visually impaired
people and sleep we found out that Devon cannot sleep with ANY lights on at
all anywhere in the house....not even a night light. We also had to have
some window coverings made with black flannel and opaque backing that we
Velcro over his windows every night and take down every morning. That way
when a car comes down the road at night or if an armadillo comes along
rooting in the side yard and sets off the neighbors flood light...it doesn't
wake him. He DOES sleep much better now :o) Devon does not have sleep
apnea...but he DOES/or DID have disordered sleep (a lot of kids with
disorders like our kids have don't make enough of their own Melatonin). We
finally cried "UNCLE!!!" when he was 7 years old and asked his doctor if we
could try Trazodone because I'd heard from people on our list and off who's
child had had good results with it. Devon takes the lowest dosage even now
(50mg) at around 9PM (about 2 hours after he has already fallen asleep on
the couch). He also gets a 3mg Melatonin pill mashed up with it. He sleeps
until around 4:30 - 5:30...sometimes as late as 6 AM :o) We may need to
increase it sometime soon...but we'll see?? Bryson is probably still be too
young for these things??? I should also mention that we tried many things
before we ended up where we are. His pulmonologist suggested many things to
try and reset his "sleep clock"....including rousting him at certain times
and Benedryl for 4 nights in a row (our doctor told us to never give Devon
anything like Benedryl every night to make him sleep)...and Benedryl does
not make him sleepy anyway. A sleep study wasn't and isn't possible for
Devon because we were told he would need to have leads hooked up to him and
oxygen...and no sedation...and Devon won't tolerate any of that and never
would even as a baby.

We are, only in the past 6 months or so, trying something to slow him down
some during the day. He's now on Strattera (60mg) in the morning. He is
sitting down more...and seems more vocal. BUT the jury is still out if it's
helping or not because it's hard to tell with all the behavioral stuff
that's been happening since before the Strattera. We're working with a
behavioral specialist/therapist to help us get that under control but it may
take a while to get what has been done to be Undone :o) 

I hope Bryson's folks will soon have some relief and get some sleep...but it
may be a while??? 

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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