I'm happy to hear the report I was expecting, and I think that the appropriate steps have been taken to get Little Miss A's bone development headed in the right direction. I am not surprised that there is no osteoporosis, as the bone density tests at young ages have little value outside setting baseline measurements for futures tests. Unless a child had been brought up on a diet of Dr Pepper and Skittles, it would seem impossible for a child Miss A's age to have bones as bad as had been suspected. Maintaining a high Hb and non-desferal chelation will play important roles along with the dietary considerations. I would be very slow to even consider biophosphonate drugs at this age. The importance of vitamin D in sufficient quantities cannot be overlooked, as it is probably more important than calcium itself in building bone.
I also want to point out to everyone the importance of vitamin D in this process. Vitamin D is probably mislabeled as a vitamin. It is actually a hormone and acts as a receptor for dozens of essential nutrients. Without adequate vitamin D, it is impossible for these nutrients to be used by the body. Calcium is one of these nutrients and without enough vitamin D, calcium will not do much good. So, everyone should remember that calcium has to be taken in a context that includes vitamin D, magnesium and the essential trace minerals that are required to build bone. A product like Osteocare, takes care of most of the needs. However, added vitamin D is usually necessary. Recent research has shown that an astounding percentage of the human race has low vitamin D levels, and research with thal majors shows that almost all are deficient in vitamin D, which should not be any surprise, as we see this with most vitamins and minerals. The stresses of thalassemia result in a much higher need for most nutrients than what is normally seen in the non-thal population. The best source is direct sunlight. I read just this week that window glass filters out the UV B rays. UV B rays are responsible for producing vitamin D on the skin, so sunlight through a window has a greatly reduced value. It should be direct outdoors sunlight. Unfortunately, this is impossible in northern climates during a great part of the year, so supplementation (or a "safe" tanning bed) is necessary.
The growth and development of this group has been years in the making, dating back to the late 90's, and we have become a significant entity in the international thalassemia community. It is heartening to hear these reports that doctors are pleased that patients are coming to them with a real understanding of what is involved in the various aspects of thalassemia and its treatment. Too often, doctors seem annoyed when patients know a lot and ask questions, so it's very encouraging to hear that our efforts are proving helpful to both patient and doctor. I hope that the doctors are becoming aware of thalpal.com and that there can be real value to internet forums when the dedication and work to succeed are present. The efforts of our community to share experience and to help and teach each other is having tremendous results for many people. It is a true community effort and could well be a lesson to other groups on how to be effective by putting the common purpose first and foremost.