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update on - bone density

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Hello all,

had his left (And final) rod removed last week and is now

rodless....After a year of complete support from his rods he is

having a difficult time adjusting to his horrible curve and the

pressure put on it when he sits for too long. I am so sad of this

major system failure but have begun to get some answers of why this

all happened.

had a bone density test done to measure exactly how soft his

bones are. A Z score of 0 is normal healthy strong bones. The doc

said that a score of

-2.5 is quite severe and 's score is -5.4. His bones are very

very soft and it is a wonder how these rods even lasted more then 24

hours.

The next step is meds to strengthen the bones. Pamidronate will be

given through iv for three days in a row every 4 months. The doc is

quite sure this will make his bones much stronger. However the

sideffects sound horrible but he assured me that they are very very

rare and even more rare in children. If any of you have any info on

this drug I would love to hear from you.

I hope this works as it is our last and only chance. We need more

time to grow!!!

Thanks for your ears. It has been quite the week!

Connie

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