[tri-med] Nitey nite Devon???????

Hi All!
Well Nanci...I'm hoping maybe the thread you started a few weeks ago about 
medications might have helped us??? Devon has ALWAYS had sleeping issues...and 
although it has improved since that first 2 years...it's still a big problem! 
I've never really thought too seriously about using a medication to help Devon 
to sleep (although I DID try the Benedryl for 4 nights in a row to try and 
alster Devon's sleep clock as prescribed by Devon's Pulmonologist)...mainly 
because I really don't like the idea of giving him anything for something like 
that...but my current level of exhaustian is really starting to get to me :o( I 
have no energy...I'm ALWAYS tired...I used to be so organized...never forgot 
birthdays, anniversaries...etc...but I'm doing well to remember my own family's 
special days now let alone anyone elses. I can't seem to focus....anyway...lets 
just say I'm ready to try something drastic because I've tried everything else 
I have heard of. I thought I was onto something with covering his windows and I 
did see a big difference....but it only lasted about 3 weeks and now he's worse 
about his sleeping patterns than he's been in a very long time!
After reading Glen's post about Mark's meds I made an honest to goodness note 
to myself to ask about the Ambien to possibly help Devon to sleep. As it turns 
out my sister uses it sometimes because a couple of her meds cause her to have 
problems sleeping. She brought me the fact sheet from the pharmacist on it and 
she also told me what her doc says about it. The possible side effects are 
limited to possible drowsiness during the day and maybe some dizziness. I 
figure Devon gets drowsy during the day already and he has balance problems 
because of his vision and hearing issues so how bad could it be????? It's also 
suppose to be a mild sedative/hypnotic. I'm having funny visions of me getting 
right in Devon's face and staring at him saying to him in a monotone 
voice..."You are getting sleeeeeeeeepy...you will no longer whack people by way 
of greeting or showing frustration or anger....you will no longer take your 
clothing and pullups off and finger paint with the contents...."....etc 
etc...you get the picture :o)
Today I spoke to Devon's ped and didn't really know how he'd respond...I've 
never ask him for anything like this before. He said he didn't know much about 
it but that he'd look it up...he did so while on the phone with me :o) Glen...I 
may know why you're only allowed a certain amount at a time??? Ambien is only 
approved for people 18 years and older...so it has to be closely monitored. 
When I asked him what exactly that meant...could he/we get into trouble for 
trying it on Devon??? Etc??? He said that we couldn't get in trouble unless it 
had an adverse affect on Devon and he said that even then we would just have to 
tell whoever may question it that we have tried many other means to change his 
sleeping patterns/habits and none have worked...hence the Ambien. Sooooooo he 
said, "sure...lets try it"  :o) So needless to say I'm having very high hopes 
and visions of sleeping all night...not getting up until 4:45 AM when I have to 
get up for work :o) And it could even help with some of our behavioural 
problems with Devon as a bonus...we'll see :o) So please everyone cross all 
crossable body parts that this helps! I think I'm going to wait until friday 
night to try it the first time so I can watch him closely but I'll keep you 
updated on it.
Glen...which strength is Mark on? Is it the 5mg one?...Can you tell me how much 
he takes and the strength??? and Marks weight? I'd just like to have something 
to sort of measure from when I get Devon's dosage...just to be sure it's 
somewhere in the right neighborhood and no mistakes are made dosagewise since 
it's not normally for children. Thanks :o)
Love,
Penny...devoted wife to Joe and "Mom" to Nick (11 1/2 yrs...lover of Harry 
Potter, Pokemon, Fishing, Legos, Zelda, Popcorn Chicken, Pizza, cheese sticks 
and chocolate icecream w/ovaltine sprinkles) and "Mommy" to Devon (AKA-Stinky 
Boy, The Chief or Devonrude...Lover of Bear, Elmo and the Muppets, Stuart 
Little, Barney, Blue, Pooh and Co. and food in general, 7 years old (6-15-95) 
!!! Full Trisomy 13 w/balanced translocation 5 and 13)...Brat and KC (the 
feline children), Snitch and Lil' Dude (Nick's turtles :o) 
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of my 
dear friend Karen!
And last but not least, check out the homepage I made! 
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone (Psalm 
118)

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

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