Discussion Forums > Thalassemia Major
Question for Andy...
manit:
hey andy this is pleasance,
i had forgotten my passwrd and so strted anew account today as manit nyways hows u?????
well jst was goin thru thj=ese post so thought of letting u know tht we stay in mumbai and jst aweek back i did the t2 scan for my daughter anit who is 6yrs old and yes 1st she did cry but then was fine..............n yes she did have problems in holding her breath for fewer sec as she was alil nervous but then the technician suggested tht i should stop her breath as in when req according to the instructions by closing her mouth and nose and then evn i was skeptical about the same but ma daughter suggested tht i should do so and she wld co-operate and her reports had come today hwerein it stated...HEART--------33.38-----NONE
LIVER---------1.27--------SEVERE
SEVERE HEPATIC AND ABSENT MYOCARDIAL IRON OVERLOADING IS SEEN.
so i went to dr mb agarwal and he suggested me starting asunra for her tht is 800mg per day
as her iron levels have exceeded to 5200................
pls lemme knowm what is ip6
and yes we have also done her dxa i:e bone density test........so wld be strting her calcium too any ways u pls share ur opinion on this pls..........need help
Andy Battaglia:
Hi Pleasance,
You really do need to start chelation immediately. Right now the heart is safe but this will change without chelation. Please do start Asunra immediately. To minimize reactions to the drug, start out with a low dose, about 1/3 of the required dose, and stay at this dose for 1-2 weeks and then raise the dose. This helps the body get used to the drug without getting the bad rash that occurs when the full dose is taken when starting. Dr Agarwal is an excellent doctor so please follow his guidance.
IP6 is a naturally occurring nutrient that is related to the B family of vitamins. It is also known as phytic acid. It is derived from the bran of grains and is a natural iron chelator, but not strong enough to rely on by itself, and also a powerful antioxidant. Antioxidants are extremely important for thals to help prevent the damage that oxidation does to cells. Tea is another very good antioxidant.
Emby:
Dear Andy, how are you? Hope you are keeping well.
I have a question regarding copper. I was told today by my childrens Dr. that they both have some diffiiciency in copper, with the normal levels being 12 our youger ones at 8 and the older one at 10. We were told that the hospital does not give copper supplements.. ???...that they could eat copper rich foods or buy supplements from Holland and Barrets :-\!
So... we will buy it from Holland and Barrets but the Dr. could not tell us what dose to take.
We were told Ferroprox has an effect on copper in the body.
Please can you tell me about copper difficiency (Dr. did tell me but i forget a little except that it could make them tired) and how much do you think they should take?
Thanks soooo much.
Andy Battaglia:
Hi Emby,
They can safely take 500-1000 mcg copper daily, which is .5 to 1 mg daily. A good calcium and mineral supplement that is sold in the UK is Osteocare chewable. You can see this at http://www.vitabiotics.com/Osteocare/chewable_formula.aspx I believe taking a good mineral supplement is a good idea for all thals.
Emby:
Thanks Andy,
When LB (little brother) was taking Osteocare tablets, vit d, calcium, magnesium, he needed to urinate alot so he has stopped them for a while. As for the copper defficiency, how could it affect them if it got lower?
What time is it there..did you just wake up...thanks for getting back to me quick :smiley.
By the way BB (big brother) passed his driving test today...
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