Discussion Forums > Thalassemia Major
Update on Lil A
Zaini:
Thanks for an update Sharmin,
Good to know everything is fine,regarding Vitamin D ,Few days ago i was talking to my cousin who is a family physician and when i told her that me and my daughter we both take 1000 IU of vitamin D daily,she was like you don't need that much and you shouldn't be taking this much,neither you nor your daughter,i reminded her that me and Z both were deficient according to our blood reports,but she said that body requires only 400 IU daily,not more then that.To be honest,i did become a lil bit concerned when she said this so confidently,but then i remembered how much D Andy takes and has been taking for a long time,so i went on with 1000 IU,and now i am happy that i did,seeing what dose Dr Vichinsky has put Lil A on.
Will wait for your another update :hugfriend
Zaini.
Andy Battaglia:
Dr Vichinsky told me exactly the same thing at the NYC conference. They do not see good results turning around vitamin D deficiency on low dose and doses of 50,000 IU were being used to get some real progress. The research on vitamin D is progressing rapidly and what was considered a proper dose just a few years ago is now considered to be useless. Dr Vichinsky's program will ensure that little A's bones are strong during his developmental years and will prevent many problems in his adult years. As thals are growing older, many new problems have come to light, and preventing osteoporosis has become an important goal. With thals, an ounce of prevention is worth a ton of treatment.
Bostonian_04:
Hi Sharni,
so nice to hear about LilA doing well & his SQUID number is great. Your post is so encouraging. Thank you. Today I was feeling low and came to this site and already feeling uplifted.
Andy Battaglia:
I want to take this opportunity to remind everyone why I am so convinced that an annual evaluation is necessary. These small steps being taken with little A will have huge rewards over the years. Making any necessary changes to the treatment program are the result of this annual evaluation and this has long reaching importance. An adjustment here or there may seem like simple things with minor meaning, but they are extremely important for the long term. Do we want patients who are constantly trying to correct situations as adults, or do we want patients who are able to avoid so many of these problems as adults, because their treatment has been modified as needed throughout their younger years.
Never hesitate to get those annual evaluations.
Manal:
Hi Sharmin and dear friends
I am so happy to hear about the good news of little A, congratulation. Both of you are doing an excellent job and i am happy too that you will be meeting Dr. Wood, he is a wonderful doctor.
I am too very interested in this issue of bone density. On what basis or reference did Dr. Vinchinsky decided that he wanted the the bone density to increase. Is it the DEXA???
Is taking zinc, the way to increase bone density???
Concerning DEXA, in the last conference i attended, a doctor mentioned in his lecture that DEXA is not reliable for children and that even there are ''normal ranges'' for every ethnic group. He mentioned too that most of the comparison references have to do with the diagnosis of osteoprosis in women in the 50s
Actually i can not recall all his point of view, but what i am sure of is that he said that the clinical observation, is more important and if the child has to do the DEXA, it will be compared with the closest ethnic group and then each time you do a DEXA, you will take the previous one as a reference for the new one. Hope you can understand what i mean
manal
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