Discussion Forums > Thalassemia Major
hi new here and need some advice
Emby:
hi cherieann,
i'm from the uk. i have usually had good understanding with the previous consultants but i must say that this new consultant had arranged my children to have t2 scans which revealed a significant amount of iron around the heart. they always took desferal without missing a single dosage, perhaps only occasionaly, the consultant then arranged for appropriate treatment with their chelation and so for that reason i feel that God led the consultant into my childrens lives at the right time....perhaps the other issues are just ''teething'' problems which one might expect with new consultants. anyway we have a clinic appointment very soon and i'm hoping all will be well. i must add that we are usually always involved in all their treatment but as i have ''grown'' with thalaseamia, i feel i have learnt what to question when previously i had no idea. i think it is alot to do with forums such as this.
i would like to ask that my boys both take ascorbic acid 100mg, should they be taking other supplements as well and for what reasons?
thanks and take care...by the way you look fab in that pic!
Zaini:
Hi Emby,
Yes thals can take Ascorbic acid if their ferritin is not too high,but let them take it between meals and not with meals,as it helps absorb iron from food.On the other hand it is advised to take Vitamin C half an hour after starting desferal because it will release iron in blood and will help desferal remove more and more iron.
Antioxidants can play a vital role in keeping thalassemics healthy,i would suggest you start giving your sons IP6,which is Phytic Acid or Inositol Hexaphosphate,it a very strong antioxidant and a natural chelator,it is already present in the body and is extracted from rice barn so there would be no toxicity issue.It will prevent any damage done to cells by free iron present in blood.
I hope your sons take tea with meals,if they don't try to make it a habit as tea inhibits iron absorption from food.
Are they taking calcium? Thalassemics are prone to developing osteoporosis,so they should be taking calcium,Magnesium helps strengthen walls of Red blood cells,infact the best supplement i would suggest is Osteocare,it contains calcium,Magnesium,Zinc and Vitamin D.You can order it from www.vitabiotics.com.
May i know what are your son's ferritin levels,because if there is any iron present in their heart you might wanna consider IV Desferal.
Hope this helps :) .
Zaini.
Andy Battaglia:
Emby,
Are your children only using desferal? Has combination chelation using desferal and Ferrirpox been suggested? Ferriprox is far more effective than desferal for removing iron from the heart and the combination with desferal is the best known chelation method. Also, according to the guidelines from Oakland, it is only when you try to maitain an Hb above 10 that there is a problem with more iron being taken in. Maintaining above 9 can be done with the same transfusion frequency once the HB is raised to this point. I don't think it would require more blood in the long term to keep the Hb from dropping below 9.
Emby:
hi zaini, andy,
thank you for info. will talk with consultant about it.
my youngest loves his tea. he prefers a nice hot cuppa than somthing fizzy with a chicken burger!
as for their ferritin levels, eldest- 260 and little one 740.
please remember them in your prayers.
andy, my eldest is on combination therapy (desfrl & feriprx) and hoping , God Willing, to start little one with same. they are also expected to have a repeat t2 scan done pretty soon. i pray that the iron levels (heart,liver) will be more acceptable, God Willing.
keep well andy.....and zaini and your little babe.
Dori:
Their ferritin look pretty good. Yes. both of them.
I wish them tons of luck with all those treatments.
to them: :hugfriend
Best wishes,
Dore
p.s. There was a time I had contact with dr. Shah. I really like her. As for the T2*: it's not avaibable in the Netherlands!!! (the same for SQUID.
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