[tri-med] Re: Devon and Diffuse Osteoporosis

(I sent this same message about Nicholas to livingwithtrisomy13 but wanted to 
send it here also in case anyone else has the same issue.)
{ As most of you know, Devon sprained his ankle last week, I obtained the 
reports from his ER visit an
on them it says he has "Diffuse Osteoporosis". }

As you know, Nicholas has severe osteoporosis which caused him to fracture 
hips, femurs, tibias, humerus, etc.  He had 12 fractures in 1 year.  Before 
that, he was walking in a walker, crawling, and in kneeling and standing 
equipment.  I'm wondering if the T-13 has anything to do with it because 
Nicholas was one of the most active in his class and yet he's the one that had 
the fractures.  And Devon is very active and has been weight bearing for years.

{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?}

They could tell that Nicholas had very thin bones from his x-rays so they 
ordered a DEXA scan. That told the doctor what level his osteoporosis is.  It's 
very simple to do - it's just a scan over him (spine area) as he lays down on a 
table.  It takes about 5 minutes.  Since Nicholas has been on the drug 
"pamidronate" (infused 3 times a year) his bone density has increased by 20% 
and he hasn't had a fracture in over 1 year (knock on wood).

Nick's endocrinologist is at Riley Children's Hospital in Indianapolis.  We 
picked her because she has a bone clinic/interest in bone diseases and doesn't 
just deal with diabetes patients only.  You might want to find an 
endocrinologist in your area that deals with bone issues.  She doesn't 
recommend drugs like Zometa, Boniva, etc for Nicholas because it could have the 
reverse affect on him.  Nicholas must have frequent blood tests to make sure 
the drug isn't causing high bone turn over.  She carefully watches his blood 
before and after the infusion to make sure she is giving the right doses (it 
changes every infusion). 

We thought Nicholas had an ankle problem because he would lift up one leg and 
not walk on it.  We had x-rays of his ankle and the orthopedic surgeon gave him 
a walking boot.  Well, Nicholas was fine for a while and then it would happen 
again.  The problem wasn't his ankle, it was his hip going in and out of the 
socket.  We found out it was his hip after it fractured!  Nick was trying to 
tell us!

Hopefully you can get Devon a DEXA scan to find out.

Jayne - mom to Nicholas - T13 - 13 years old
Hudson IL

Worry looks around, Sorry looks back, Faith looks up..' 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: