[tri-med] Re: Jude/bone density studies

does ryan already have an osteoporosis diagnois?  we had the bone density
scan done as it was noted from her most recent xrays and the free series
done at the chicago conference ortho clinic that her bones "appear thin and
fragile".

her osteoporosis is pretty advanced (standard deviation -5.6 or something).
the endo was good as far as letting us decide how we wanted to approach it.
since kam has had no breaks yet (knocking on wood) we decide to just do
supplements and no meds.  kam would have to take the bone building med in a
4 hour long IV every 3 months.  she has only good head veins and this always
freaks out the IV folks.  plus there is no research to document how much
quality the new bone is....just not enough pediatric cases i dont guess.

our osteopath is also a certified clinical nutrionist.  he gets us an oscap
and a magnesia tablet.  i empty the capsules into her tube feeds.

kam is in her pony walker for at least 1.5 hours a day.  usually split in 2
times.  and she doesnt stand but rests much of the time.  we try to stand
her up and play with her or just make her stand for a bit each day also.
since her knee cap has been going out she doesnt like to stand as much.  i
guess i need to look into a stander again.  it just seems to be of less
value since she can not move in them.

i think she is due for her 1st year follow up scan in november of this year.
our insurance would not even give us more pt for weight bearing as they said
it would not improve her quality of life.  i think the insurance drs think
she is a blob laying in a bed somehwere.

hope this helps.
jude, mom to derek-17, kelsey-14
and kameron-5-full t18
golden, colorado usa
http://home.attbi.com/~jfwolpert2
----- Original Message -----
From: <MSTEELE68@xxxxxxx>
> I remember you posting about Kammie having bone density studies done. What
> prompted them and since finding out the results, have you had to change
diet,
> had things, etc.?
> how much time does she spend in a stander or doing any weight baring?

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

Other related posts: