frequency of blood transfusion

  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

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

thank you for ur assuring reply
guilty father of cutiepie

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".

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

Hi C.F,

I'm really surprised why she didn't get her hubby checked for Thal

Marrying outside the family does not put off testing your would-be partner. Thal can be silently present in their family too.

You can't avoid fate, but we still have to be preemptive if we know that an outcome could be wrong; then blaming our fate is not a bright excuse.

Irony of the incidence is that the husband checked himself and yet his doctor gave him 'all clear' they are still struggling 'HOW'. I would call it a fate in this particular case.

Unfortunately, there are cases where the carrier state is not diagnosed from blood tests. Such is the case with our member, Ingreece, who knew his wife carried beta thal and was himself tested three times with no sign of any carrier state. As it turned out, they have a child who is a transfusing major, because the father actually carries the lepore trait, which combined with beta thal, causes an intermedia to major condition. The lepore trait was only diagnosed through DNA testing after the child was born. Coincidentally, this is the same combination that Lisa, our founder, carried.

Perhaps sometimes, it is fate.

 

Hello Nanuaru,

I hope that your child is doing well.  No one should feel guilty here - we are all parents who have always wanted the best for our children.  We are parents who are dealt with a difficult situation and a lot of maintenance work to keep our children healthy.  I know that the guilt creeps up sometimes - 'if only' we could have known or prevented all of this - but if there were a way for us to prevent our children from being sick - we would have done it in a heart beat.  That opportunity did not exist - so let us consider ourselves to be brave and hopeful parents. 

Yesterday our son decided to share the 'news' of his thalassemia with a family member who was not yet aware.  He had come home with his IV after the ritux because he had a transfusion in the morning.  He showed her his IV and his desferal and told her that he has thalassemia.  She immediately pointed at my husband and myself - while my son stood in front of her - and said 'This is your fault - you did this - and now he is suffering".  I was speechless, and I have had a difficult night after this.  But I know that I did not purposely or carelessly allow my child to acquire this difficulty in his life - I would do anything to make it easier for him.  I was reassured that everything was okay - and now that he is here I don't regret anything - nor do I feel guilty for bringing this beautiful child into this world and giving him the best possible care that I know how.  These children are a gift and if I could take the pokes for him I would - as would all of you for your little ones.  We have to believe in them.

Sharmin

hi

andy, can i be testet to look for

witch thal-trait i have....

if yes tell me for what a test i have to ask for...thx

                                        panos

Hi Panos,

It requires DNA analysis to determine the specific thalassemia genes that you carry. Hope you're doing well buddy.