Discussion Forums > Thalassemia Major

My new born baby has possible Thal major

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Zaini:
There are a few products of Vitabiotics available here,so the company must be importing them,i am not sure,i'll try to search more about it.

Zaini.

momofShreyas:

--- Quote from: momofShreyas on January 24, 2009, 03:57:52 AM ---Andy,
Yes this is at CHOP. That is what is worrying me even more. And during last transmission my son developed a fever, because of which they had to stop the transfusion. I hope no antibodies have already developed in his body.

Thanks
Meena

--- End quote ---


I just wanted to update on the genotype testing on my son. The doctors at CHOP said, even though they can do genotype testing, giving genotype matched blood to Shreyas for everytime is not practical. They said they do extended phenotype testing to test for anti bodies in the blood. I have contacted both New york  and oakland hospitals and they both have high praise for the doctors at CHOP and they too said they do not have genotype matching on the blood. Also just wanted to add my doctor - Dr. Jennifer Mangino is an excellent doctor who is extremely concerned about the welfare of my baby. She has gone above and beyond to make sure I understand my baby is in safe hands. I am saying this because my previous post looked like I was showing the doctor in wrong light but it is the standard protocol they are following. All the comprehensive care hospitals follow the same procedure, ( atleast NY and Oakland ) do.

Thanks
Meena

ocwoodmanp:
Meena -
We go to CHOP also and will be there on Feb 25th for our daughter's next transfusion.  They apparently have a conference in the beginning of April (lead, I believe, by Dr. Cohen) which is to update patients and their families on thalassemia.  I have been told it is excellent.  We did not have the opportunity to attend last year, but will make every effort to be there this year.  Keep your eyes and ears out for the conference - like I said, we have heard it is excellent.

ash786:
Andy
This is mother of ayesha 3+ months old , her hb level was 7.4 ,yesterday was her first transfusion.
  my daughter had a test of RH phenotype before transfuion ,  can u define what kind of test it is, i ask them for having a genotype n phenotype test before transfusion but they dont have that testing in the hospital, i told them it is important to have before transfusion but the docter said  it is not
 
regards
mother of ayesha :lovethissite

ash786:
hello
 mom of shreyas , how are you and shreyas i know you because almost reading all the posts , hows he doing now  my daughter is also thal major and we just get know 1 month back  she had her 1st transfusion  she is 3months+  can u tell me at the time wen shreyas was 3 months what was the procedure after  transfusion , what the doc's suggested u  her hb was 7.4 before transfusion  i wana know more about  CHOPS are they giving him any kind of supplements  any information which can be usefull for my baby i dont want to miss on any thing  her next transfusion is on 9th sep.
thank you
regards
ayesha's mom

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