[tri-med] Ambien Trial update

Hi All!!!!
Well...I thought it was time to update you all on our Ambien trial with Devon. 
To recap...We tried Devon on a 1/2 dose of 2.5 mg of Ambien to attempt to 
improve his sleep patterns. I was really hoping that would help...but 
alas...2.5 mg didn't touch him! Out of desperation...at the conference...I went 
back down to the welcome party, after we took Devon back to our room, to talk 
to Gina and Glenn about Mark and his taking a 5 mg dose. I had already talked a 
little to them about it and had ask them about some affects I'd noticed with 
Devon that I wasn't sure were normal. About a 1/2 hour after giving Devon the 
Ambien he REALLY tossed and turned for about 30-45 minutes (IF he's awake when 
I give it to him)....so much so that he falls off the furniture!!! Turns out 
the same thing happens to Mark...Gina said that they do get very restless 
before falling into a deep REM sleep...PHEW...major relief!!!!
Anyhooooooo Gina and Glenn had gone to bed already so I cornered Dr Carey and 
Dr Showalter and asked them their opinion on giving Devon a whole 5 mg dose. 
What I really wanted was for someone to tell me it was ok to give the full dose 
to him right then...I was so tired I was desperate...but I was also convinced 
I'd overdose and kill him ! They didn't know alot about the Ambien but Dr 
Showalter said he would look into it for me. At the picnic he called me aside 
and said that 10 mg was the actual correct adult dose so 5 mg should be fine 
for Devon but that I should consult his ped first....darn it! I was sorely 
tempted to try it that night but I just couldn't do it....I was still scared!  
So right after we got home I did call Dr Bell and spoke to him about it and 
told him what they told me...he said that YES I could try it!!! YAHHOOOOOOO!!!! 
Still I had to really battle myself to give him the full dose. I gave it to 
Devon in full 5mg doses every night for a week and a half now and I haven't 
decided if it's a worthwhile thing or not???? Your opinions please???? Before 
the full dose of Ambien....Devon was getting up at 2 AM every night like 
clockwork...sometimes not til 3. Since the full dose he's been sleeping to 
4-4:30 AM 98% of the time. I was greedy...I really wanted it to be more like 
5AM,...but still 4 is better than 2 or 3 right??? So tell me everyone...do you 
think that's a big enough improvement to warrant keeping him on it? And Glenn 
and Gina....what does your doc say about long term affects and getting 
dependant on it??? I have a call into Dr Bell to speak to him further about 
it...I'll let ya know what he says :o) 
Heather (our genetics counselor whom I'm fowarding this to)...what do you 
think...can you ask one of your pediatric pulmonologists their opinion???
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)... KC (the feline 
child...Brat gained her kitty wings 7-09-02 she was 16 years old +), 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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