Discussion Forums > Thalassemia Major
Update on Lil A
Sharmin:
Hi Manal,
Lil A had a Dexa one year ago and he had one during this visit. We don't have his most recent results yet, but the DEXA done one year ago was normal for a normal child of his age. I don't know if they took into account his ethnicity. Dr. Vichinsky felt that it would benefit Lil A to get his bone density higher so that he does not have problems over time.
In order to increase bone density his clinic has done several studies. Zinc on its own has had significant affects on increasing bone density. His clinical nurse told me to put Lil A on 20 to 25mg of Zinc a day.
Another factor in increasing bone density is vitamin D - vitamin D is very helpful for many many aspects of thalassemia. Calcium, magnesium and trace minerals are also very important. They stress milk and milk products a lot in Oakland. We were given many pamphlets on the importance of milk. They suggest to take lactaid with milk if milk upsets your stomach. They find that milk and milk products significantly increase your bone density.
Also, very importantly keeping up with transfusions - keeping a hemoglobin near 10 (at least above 90) in transfused thals is very important as it prevents the marrow from becoming unnecessarily active and making retics. This process weakens the bone from within as the marrow expands.
I hope this information helps, we are still in California. I will write more once we get home.
Best,
Sharmin
Sharmin:
We are still waiting to get results for the pancrease and pituitary study. The purpose of this study is to learn about iron deposit in these organs and the effect on their size and function. Hopefully Lil A's participation in this study will be helpful to others.
As Andy has said many times, getting the iron levels as low as possible is best to prevent impact on the function of these organs and possibly reverse the tissue damage by revoming iron and restoring function. Getting the iron levels as low low low as possible is very important. As Lena has told us - combination chelation is key - iron levels as low and close to normal as possible are best in order to avoid any iron related problems.
Dori:
As for this new chelation medcation: This doctor means that this new medicine will enter the lastest phaes of approval? Next year we can expect trials of a new medicine?
This brings me by Novatis newest application for Iphone.It is made for professionals to calculate how much mg Exjade a patient should get. At first I liked it untill I typed '500' as ferritin level. There was no advice because of the low level. A level of 500 was seen as healthy.
I also have heard that Dexa's by children are not reliable. As for vit D, there are more and more voices which are saying that the standards of vit D should be review.
I am glad to hear there is such study because I am very interested in that field of study. Please, share more details when you got them. I am glad to hear little A is doing well. Did you have a nice time there as well? (outside hosp.)
I am sorry, but I do not believe in milk. The most part of our world population is allergic for it.Here in Netherlands it was the industry who paid all the campagnes to let us consume more dairy products.
nice friend:
Sharmin,
i'm glad to see his latest results ... i wish himm all the best of everything ....
Best Regards
Take Care
Umair
Manal:
Thanks Sharmin, this was very helpful. Hope you are all doing great :hugfriend
manal
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