Bone density test results

[jshet]

Hi everyone. My son is 17 with CF, PI, g tube. His vitamin d was low, but treated. He is very thin for his age and had a g tube placed a year ago. A CT scan was done prior to the tube being placed and it was noted that he had osteopenia(low bone density). The plan was to do a DEXA scan but because of a year of one thing after the other health wise, it has just finally taken place.

we have gotten just the numbers so far and are waiting to be contacted by his endocrinologist that was sent the results from his cf doc. We were only told the results are not good.

The z scores are
The low spine SD is -4
the whole body SD is -3.3

He broke his elbow a while ago and complains from time to time about low back spine pain that is not chronic which I mentioned at his clinic appt. and asked for the scan. He has just also started treatment to prevent further kidney stones with medication.

just wondering if anyone understands these results and what we can expect next. The cf clinic thinks we may need to treat this more aggressive then just vitamin d supplements. The cf clinic also said this may now be osteoporosis and no longer osteopenia. Just wondering what types of treatments are available.
thank you, Janelle

 

[MichaelL]

Low bone density is common in people with CF. My clinic does bone density scans annually. I don't remember my exact z-scores, but I think they're similar to your son's. I have been told I have osteopenia, but am getting close to osteoporosis. My doctor told me that although they have bone strengthening medication, there are questions as to how effective it is. She said in some cases it seems to make the bones brittle and more susceptible to breaking. I think they've also been used primarily with geriatric patients and haven't been tested as much on younger people CF.

I've been taking Vitamin D, 1000 IU twice a day. They also said doing weight-bearing exercises is also important to help bone density. In the last year, I actually had some improvement in my bone density, although this was after ten years of seeing deterioration. I realize I'm not answering all your questions, but I thought I'd still share my experience.

 

[jshet]

Thank you MichaelL for your reply. I am hoping to hear from the endocrinologist tomorrow. He does exercise which I am glad is helpful.
i Am sure he will need to start the vitamin D up again which is fine . I am hoping this is reversible since he is so young. Thanks again. Janelle

 

[MichaelL]

I forgot to mention that I also take calcium 500 mg twice a day. That might also be something to consider or discuss with your doctor.