I just wanted to add a few things to what Andy has said. Little A began taking vitamin C soon after he started desferal before 2 years of age. Until he was in grade school he required desferal only 3 times a week, 10 hours a day - along with 100mg of vitamin C 1/2 hour after starting desferal infusion. Doctors were mystified about how he maintained ferritin levels around 900 with a desferal dose suitable for a 3 year old even when he was 8 years old. I believe that beginning desferal early and using vitamin C had a lot to do with this.
Once the antibody issue began and his transfusion requirement tripled for 2 years, his desferal was not increased until the second year and even then it was only increased slightly. Again, his iron levels reached 2880 - but considering how much blood he required for such a long time - and how little chelation he was getting in comparison - it was not terrible. I truly believe that using vitamin C all of this time played a significant role in chelating iron for little A. Once we increased his vitamin C to 250mg in early July - his urine became MUCH darker red (this was 1 month before beginning exjade). Of course, Exjade further increased this affect.
I also started giving my non thal daughter 250mg of vitamin C on top of the 75mg that is in her progressives multivitamins. My son gets 250mg with his desferal - I hope that this effect continues - but my children have not gotten sick from any of the multitude of flus and colds that have gone around this fall. In fact, when my son's entire school was hit by the noravirus - with the average student being sick for 2 weeks - little A was the last to get it and he was sick for only one evening. He threw up a couple of times, had a good night's sleep and was fine the next morning. My daughter has escaped all of the colds that went around this year so far. This is much much better than previous years, especially considering my daughter just started first grade and all of the other children at school have been very sick this year. The kids have been very regular with their vitamins beginning in September (progressives, vit C, Osteocare, omega 3-6-9 - and little A with his IP6, carao, vit e, b complex) and I think that this has had a very positive impact on them. As Andy can tell you - little A does not look like the same child that he was in June 2008. The effects of supplements in thalassemia are undeniable. I am sure supplements enhance everyone's health - but in thalassemia the results are much more visible. Dr. Vichinsky is convinced that the vitamins saved little A from harm during the two year battle with antibodies.
I hope that everyone will take their vitamins and supplements! Little A is also a regular tea drinker. He has been drinking green tea everyday since five years of age, he drinks Earl Grey tea about 3 times a week as well - I am sure these things have been helpful to him as well.
Thanks again Andy for guiding us with supplements. Our local doctors agree that there is value in supplements but they do not know what little A should take and how much. Were it not for you I would not have known what to do. We were pretty happy to impress Dr. Vichinsky with little A's supplements
Sharmin