[tri-med] Re: Devon and Diffuse Osteoporosis

Good Morning Everyone!
Anyone have some info on "Diffuse Osteoporosis"? As most of you know, Devon
sprained his ankle last week, I obtained the reports from his ER visit and
on them it says he has "Diffuse Osteoporosis". This is the first we've ever
heard this.and the doctor didn't even mention it too me? Maybe he thought we
already knew about it? But I thought to DX osteoporosis, one had to have a
bone density test of some sort.can they see that just from an xray? We don't
know how severe it is, what his density is.nothing :o( He's wearing a brace
on his ankle.now I wonder if having more supports for him would be a good
idea?? Monday, after school, I'll be on the phone with his Ped. and his CMS
case nurse and ask to have Devon seen in the Orthopedic Clinic (I'll
probably need a referral from his Ped.), and I'll also be asking to be put
back in the Neurology Clinic (probably take about 3 months) as Devon's sleep
schedule seems to be deteriorating again :o( AND he vomited again yesterday
(out of nowhere) for the first time in a week :o( We no longer believe it
has anything to do with motility. I'm thinking more along the lines of
reflux and I think he needs to be back on the sub lingual Prevacid every 12
hours. We just don't want any nasty invasive testing done unless it's
absolutely necessary.he had enough of that a couple months ago.we just don't
want him put through that again.

 

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 ROCK-n-ROLL, 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 12? year old yellow lab & Smoochie, our SILLY acting &
GOOFY looking 1 yr old Basset/Dachshound/Jack Russell mix :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:
<http://www.noahsneverendingrainbow.org/> 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
<http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb&skin_id=402&utm
_source=otm&utm_medium=text_url>
&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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