Devastating News

DEXA scans do use much less radiation that traditional x-rays or a CT scan would use. Of course we want to limit our exposure to radiation, but with the DEXA scan the danger form exposure to low level x-rays is measured against the risk of not diagnosing bone loss. I do however, also question the value of bone scans on children under age 10, especially since the DEXA scan has never been shown to be able to accurately chronicle bone health over the years.

http://www.orthosupersite.com/view.asp?rID=32214

Conclusion

Pediatric health problems are increasingly acknowledged as the genesis of adult osteoporosis. As more children survive childhood cancers and other chronic illnesses, the demand for accurate monitoring of long-term effects on bone health increases. While the single lateral distal femoral scan may not appear to document a chronology of bone health through years of growth as we had hoped, it is again shown to be a simple and reproducible tool with which to measure bone density in children. Increasing experience with this technique in children may yet confirm our hypothesis that the lateral distal femoral scan can demonstrate a chronology of bone health over time. This phenomenon may require a specific physiologic scenario that our clinical vignette did not adequately expose. Regardless, more widespread use of and familiarity with the lateral distal femoral scan will lead to expansion of existing databases, further refining the accuracy and increasing the acceptance of this technique.

Now with that said, and keeping in mind the last line of the quote above, I would ask Sharmin to talk to Oakland about what they have observed from DEXA scans over the years and if they feel their experience and results have given them enough data to be able to truly diagnose bone loss in patients. I think it should also be asked if there is any danger from the scan to the genitals of growing children. I have to believe that their body of evidence concerning these scans in thals is enough for them to feel it does have use as a diagnostic tool but I would like to hear something concerning what they have observed.

Thank you Andy,

I will take some time to talk to them about this - I definitely don't want to take any chances.   Oakland did tell me that my son is doing everything that they would advise a child showing signs of bone loss anyway - he is active and he is taking cal/mag/vitamin D and zinc.  I am leaning toward canceling the DEXA scan for now. 

As it is, iron load etc. threatens normal development and fertility in thals - I don't want to do anything else to that could affect him.  I think I am better preventing bone problems. 

I will ask the questions though - because it can be helpful to other patients. 

Sharmin

Andy, Ahmad, had done the DEXA when he was 4 years, and unfortunatly i did not make use of any of the results because after this the radiology center had bluntly and carelessly told me that they don't have the reference for his age ad that i have to always stick to their type of machine so i can lately compare his results with his own.

Andy shoud i worry about being scaned at this young age (gonads) or one time would not cause a significant harm. In addition , he did an X-ray on the skull too at the same age to detect any bone deformity

manal

The low dosage should pose no risk. It is about 1/10th the exposure one gets from a regular x-ray. Your experience does demonstrate why we need to ask if the test is really worthwhile for kids or is it just another way for hospitals to make money?

I will try to get more info when I am Oakland Manal.  I also don't think that the one scan could have caused him any damaging exposure.  I have heard that it involves less radiation than an airplane flight.

Sharmin

Thanks Andy and Sharmin, i feel better now. And you are right Andy it is all about taking money because when i asked them why didn't they say they haven't got the age reference  before i scanned him, i just received no answer

manal

Thank you Andy,

I will take some time to talk to them about this - I definitely don't want to take any chances.   Oakland did tell me that my son is doing everything that they would advise a child showing signs of bone loss anyway - he is active and he is taking cal/mag/vitamin D and zinc.  I am leaning toward canceling the DEXA scan for now. 

As it is, iron load etc. threatens normal development and fertility in thals - I don't want to do anything else to that could affect him.  I think I am better preventing bone problems. 

I will ask the questions though - because it can be helpful to other patients. 

Sharmin

I think that's good for now,untill we have any other option,and lets see what Oakland has to say about it.

Zaini.

I will ask the same question (Re. DEXA feasibility in young children and exposure to Gonads) to Hospital for Sick Children, Toronto, Bone Health Center at our appointment.

One more piece of advice for all those who are taking exjade. Please don't take high calcium diet three hours before and after taking exjade, studies have shown that will cause phosphourus deficiency in the body. If you remember my daughter immediately shown phosphorous deficiency when she started exjade last year, this was reported in other children. Hospital for Sick Children, Toronto did a study (on behalf of Norvatis, Canada) to confirm the findings.

Thanks Andy and Sharmin, i feel better now. And you are right Andy it is all about taking money because when i asked them why didn't they say they haven't got the age reference  before i scanned him, i just received no answer

manal

I asked the same question, you need special software and hardware (Customized in DEXA machine) to translate the results in young children. Although HSC, Toronto has this facility but I seriously doubt the results just based on estimations.

Canadian Family,

Thank you for sharing that - I was giving my son osteocare an hour after exjade, with his breakfast.    I will modify that routine. 

Sharmin

I will ask the same question (Re. DEXA feasibility in young children and exposure to Gonads) to Hospital for Sick Children, Toronto, Bone Health Center at our appointment.

One more piece of advice for all those who are taking exjade. Please don't take high calcium diet three hours before and after taking exjade, studies have shown that will cause phosphourus deficiency in the body. If you remember my daughter immediately shown phosphorous deficiency when she started exjade last year, this was reported in other children. Hospital for Sick Children, Toronto did a study (on behalf of Norvatis, Canada) to confirm the findings.

I am sorry i just wanted to confirm,it means it's ok to give calcium after three hours?

Zaini.

Hi Zaini,

Yes it is okay to give calcium or any other calcium rish foods after three hours.

Thanks for clearing it up  .

Zaini.

Canadian Family, i just don't get it I know that exjade can chelate other minerals in addition to iron. So why should we get deficnecy in phoshprous and we are talking about calcium.

manal

Hello,

I called the hospital today to find about Little Miss A appointment. The appointment is set for May 14, 2009. Based on the blood results, the bone markers were generally okay except for one bone resorption marker which was on the higher side at 1360 (normal range was 90-1500). I did some research on internet and found this information on osteoporosis and bone markers. I suggest to run these test simultaneously just to see the general health of bones (may be twice a year). The test requires urine and blood sample only.

http://emedicine.medscape.com/article/128567-overview

In general there are two main kinds of bone markers (Bone forming and bone resorption). Please read through the article for more details.

The X-Rays done in February did not reveal any abnormality. The Osteo clinic has ordered another test of bone markers for April 09, 2009 (day of next transfusion) to save one extra poke.

On May 14, 2009 we will be meeting with our haematologist, endocrinologist and orthopaedic doctor collectively to chalk out the future plan of action.

Thanks.