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

Jude how can they say that Kammie doing standing does not improve quality of
life?  This is the very thing I am being pushed to do with Matilda so that
her bones don't become brittle.  That's why we are going through this damn
casting business and getting a prone standing frame then another walker -
our insurance co is allowing Matilda to use her part of chiro for physio and
then if we want to use another section ie. optical (since I can get that
free from the Children's Hospital).  In the end we can up her physio claims
by another $900 a year!  I would be getting pretty damn mad at your
insurance co if I were you!

Off my soapbox now.......

Catherine - wife to Richard and mum to Matilda & Tom


----- Original Message -----
From: Jude Wolpert <jfwolpert2@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, April 26, 2003 7:19 AM
Subject: [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
>
>

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

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