[tri-med] Re: continuing sleep probs

thanks sooo much for the reply during ur busy time
i will digest and try to respond tomorrow!
jude, mom to derek-22, kelsey-20 and kameron-11- full trisomy 18
golden, colorado
www.judewolpert.com
http://home.comcast.net/~jfwolpert2/wsb/html/view.cgi-photos.html-.html

----- Original Message ----- 
From: "Penny Victor" <pvictor@xxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Thursday, August 28, 2008 7:18 PM
Subject: [tri-med] Re: continuing sleep probs


> Hi Jude :o)
> I know this was probably posted a while ago...but here's my two 
> cents...and
> it's only fair to say you may not want to read what I have to write...
>
> As you may remember...or not...we spent the first 7 years of Devon's life
> severely sleep deprived. Finally...not long after the SOFT conference the
> year he turned 7, I spoke to his pediatrician about trying Trazodone. I 
> had,
> at first, asked about Ambien (after speaking to the Csontos who'd been 
> using
> it for Mark). He gave me a script for Ambien and I actually went and got 
> it
> filled...but then we chickened out. Or rather I chickened out. Joe said 
> he'd
> go along with me on what I was wanting to try. Well, I then put the SOS 
> out
> on the list asking for ideas and got some responses about the Trazodone 
> and
> decided to go with that instead.
>
> It took about a month if memory serves, but we started seeing an
> improvement. As a baby he had only ever slept a few hours at the most at a
> time and then would get up to party a few hours before MAYBE going back to
> sleep for a couple more hours. It improved SLIGHTLY over the years since 
> his
> "babydom" but never got great. So when he'd been on the Trazodone for 
> about
> a month (and Melatonin), instead of him going to sleep at 6 PM and getting
> up at 11 or 12 PM and then partying for a few hours, he still went to 
> sleep
> at 6 PM but would sleep until like 4-5AM. Now THAT we could handle!
>
> People always said things like "well THERE'S your problem...just keep him 
> up
> later." Well...I KNOW that sounds like it would be doable...and I know it
> SOUNDS like it would work...but first of all, to those that would say that
> to me, I say this..."YOU TRY AND KEEP HIM UP LATER!!! WE COULD PUT A 
> GRENADE
> IN HIS DIAPER AND IT WOULDN'T KEEP HIM AWAKE!!!". And YES! I'm yelling at
> you!!! And 2nd, on occasion when he would stay up later (because it was 
> HIS
> idea), it made ZERO difference in when he would wake up and stay up.
>
> So...when he DID start sleeping longer, we were thrilled although still a
> bit concerned about long term effects. We never SAW any ill effects from 
> it
> but can we say for certain it didn't cause any? No.
>
> Anyways...then about a year and a half ago, we started noticing he wasn't
> sleeping well again. And it was very worrisome even though the problem of
> him getting out of bed and getting into dangerous trouble was no longer an
> issue with his enclosed bed. I still KNEW he was awake and not only could 
> I
> not sleep knowing he was awake, but I worried constantly about what ill
> effects his not sleeping would have on his body and ours too for that
> matter. There was also the little matter of him falling asleep at school 
> or
> summer rec...and by this time, he was having a hard time staying up until
> even 4 or 5PM.
>
> We had already increased his Melatonin over time when he would start to 
> have
> problems again, to 3 mg and his sleeping had stabilized. But when the
> problem became really bad this past year and a half, we finally asked if 
> we
> could increase his Trazodone since we had never wanted to up the dose
> before. We tried that too...but to no avail...and when that didn't work we
> just weaned him off all of it since it wasn't working. It was during all
> this BS that we found out his vision had been deteriorating.
>
> Up until Devon got the Acute Pancreatitis back last month, he was getting 
> up
> very shortly after we put him to bed and he was staying up all night. And 
> we
> were very reluctant (after all the medication scares of this past year and 
> a
> half) to try any more drugs even though I was desperate enough to be
> researching a couple. I hate to say that it wasn't until he got so sick 
> for
> 3 weeks and was in the hospital not even fighting staying in a regular
> hospital bed that he slept probably 99% of the time. We wondered if we 
> could
> somehow "use" this whole horrible turn of events to "reset" his sleep 
> clock?
> Something we had never had any luck being successful with before :O( I 
> THINK
> he has been doing a little better? He has been staying up until at least 6
> or 6:30 again and sleeping later than 11 or 12. Although what time for 
> sure
> he's sleeping til is not for sure. I've just been too exhausted to hear 
> him
> even with 2 monitors on him :o( But he must be doing better because he's 
> not
> falling asleep during the day now except on the bus on the way home...but 
> he
> always does that :o)
>
> We ARE giving him a "natural" sleep remedy called MidNite. We've only been
> giving it to him since he got home from the hospital and we can still
> increase the dosage if we need to. MidNite has Melatonin, Lemon Balm,
> Chamomile and Lavender in it...all things known for use to relax and help
> with sleep. It's a melt away tablet but we mash it along with his Prevacid
> and give it to him in applesauce at bedtime. It's not supposed to be hard 
> on
> the pancreas and liver and thus far his pancreatic enzyme levels are 
> telling
> us it's not inflaming his pancreas. I'm happy to say that as of this past
> Monday...his Amalayse and Lypase levels are again within normal limits :o)
>
> Jude...I'm reluctant to encourage you or ANYONE to go the medication route
> though I condemn no one that feels they have to and who feel that there 
> are
> no ill effects from whatever they're giving. It's just after all the AWFUL
> and SCARY things we went through trying medications this past year and a
> half, and the PETRIFYING things we read in the 26 page post market search
> (that the public is not privy to) on one of those drugs. A post market
> search is the stuff that comes to light and is reported AFTER a drug is 
> put
> on the market for general consumption. Just ask Fawna...she'll back me up
> here.
>
> And even the "natural" remedies are scary to us. You REALLY have to 
> research
> EVERYTHING!!!! For instance, there are several homeopathic remedies that 
> Joe
> takes for his chronic pain that cannot be taken for more than 2-3 weeks at 
> a
> time or it WILL become toxic to the pancreas and liver.
>
> In short Jude...good luck and may the force be with you...and please just 
> be
> careful...ok?
>
> Love,
> Penny...loving & devoted wife to Joe, the best husband in the world...mom 
> to
> Nick (17 yrs old...lover of Fishing, Dragons, Turtles, WofWC,
> RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (13
> 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...visit Noah's Never Ending Rainbow at: 
> www.noahsneverendingrainbow.org
> AND...http://livingwithtrisomy13.org/album9.htm
> AND http://web.coehs.siu.edu/Grants/TRIS/
> AND my new slideshow at:
> http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb&skin_id=402&utm_
> source=otm&utm_medium=text_url
> "Faith sees the invisible, believes  the incredible & receives the
> impossible"
>
>
>                  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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