Discussion Forums > Thalassemia Major

frequency of blood transfusion

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nanuaru:
 :rolleyes Hi ,
       earier i was on site with name of nanu. though not a frequent visitor cause of hectic schedule but try to visit site as often i could . can u pl. help me try to answer my queries .
1) nanu my daughter one year old is having flutuating pretansfusion hb ranging from 8.5 to 9.4hb/dl after 4 weeks . should i decrease the intreval.
2) is their any danger for donor of bone marrow i.e any life threatning consequence sice i'm thinking of going for HLA matching with my elder daughter
3)I've started giving RESVERATROL25mg/od in sweet lime juice to nanu after reading about it on this site .is their any body else  who is using it and can you share with me if their is any appreciable change in com=ndition of thal major
4)i'm also giving her 10-15ml of green tea b.d should i continue with it.
5) nanu already had 10 B.T. since oct.2007 when should i get her ferritin level checked
         Thanks ; awaiting for ur replies
                                                                           Guilty father of my daughter

Narendra:
Hello,

The pretransfusion levels fluctating is not abnormal. There are lots of factor's involved in the Hb levels. It depends on what the HB of the blood is when she got transfused, if she has gone through any infections lately etc. The best is for keeping the HB level close to 10

For donor of BMT, there is no danger but you might want to get the HLA match up done first

With 10 blood transfusions, it would be a good idea to check her ferritin level and if they are above 1000, with a prescription get Kelfer or Exjade(Asunra) treatment started.

The world has changed. We have oral chelators in today's world. Think of times when there was no knowledge of Iron Chelators... So don't feel guilty. She can live a long and healthy if you show her a positive attitude and are ready to treat her with whatever is needed

nanuaru:
thank you for ur assuring reply
guilty father of cutiepie :hugfriend

Canadian_Family:
Narendar,

I must acknowledge, its always a pleasure reading your posts.

Nanuaru,

I read your post about how you even being a doctor feels guilty of not knowing about thalassemia etc. Just to let you know you are not guilty, sometimes we cannot beat the fate. My wife is a physician and all her life she thought she was iron deficient, my father gave me vitamins and stuff all my life but we never heard about the thalassemia. Infact after my daughter's case we found that both my parents are thalassemia minor and they were lucky all their children were minors. So stop thinking about it being guilty...

One real time incidence is my wife's classmate. She knew she was thalassemia minor and she had thalssemia major cases in her family. She refused to get married in the family because of the dangers of having a thalassemia major child and choose a husband from outside her family, yet she has thalassemia major child. What would you call that ofcourse fate "You can't escape that".

nanuaru:
Thanks Narendera
  I'm not feeling not feeling guilty of not knowing about thal. but i feel guilty of not overuling the diagnosis of gyanec when irepeatdly told her about continous low hb of my wife inspite of taking iron and folic tab & not insisting for thal test.keep posting Bye :hug
                                      guilty father of cutiepie

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