[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

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