Discussion Forums > Thalassemia Major
My new born baby has possible Thal major
Narendra:
--- Quote ---I have sent her the links from here and argued, if that test does good to the patient why not do it.
--- End quote ---
Even though our group has hands on experience with people who face thalassemia everyday, the doctors would not take us as an authentic source. Could you instead point to the Standard Care Guideline which you mention given to us by Children's Hosptial Oakland? May be they think that is authenticated document and they know that Dr. Vichinsky's document has been written after lots of research.
This is exactly, what we like getting to know what is best and I really like Sharmin's point of not letting other's go through what they have gone through.
Sharmin:
Narendra,
I looked through the document - it talks about genetic testing before beginning treatment but it does not talk about genotype testing for transfusions (as far as I can see - maybe someone else can find it...) I will have to find another document. Maybe I can them for it while I am in Oakland.
Sharmin
momofShreyas:
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
Sharmin:
Dear Meena,
It is unlikely that he would have developed antibodies so soon. Do you know if they did at least a phenotype test before giving him his first transfusion?
One of the biggest risks of transfusion are transfusion reactions - which can be reduced or prevented by proper analysis of the blood before transfusion. Phenotype testing is helpful, but genotype testing is superior. It is helpful to know the recipient's genetic make up so that blood products can be matched properly and the patient is not introduced to anything that can cause trouble.
Most centers do extensive cross matching - but I don't think that is enough - my son has produced many allo antibodies over the years and this would have been prevented if he were not exposed to the antigens.
I will be going to Oakland next month - I will try to get more information and proper documents for you. I will also bring back names and numbers of labs that do the testing. Our doctor actually spoke with Dr. Vichinsky on the phone which was very helpful for both of them in understanding my son's case and the course of treatment.
Most thalassemia patients visit Oakland to do SQUID testing, even when they are seen at other centers. You can make an appointment to see Dr. Vichinsky to get an opinion. In the future you can meet with him once a year for a follow up. We have chosen to do this for our son. We have been going to Oakland since he was 5 years old for the SQUID test but we never thought to see Dr. Vichinsky - this year we made an appointment with him (because Andy suggested that we do) and we were very pleasantly surprised.
Sharmin
Sharmin:
Sometimes it is very much worth researching and discussing what we learn together on this site. Andy helped point us in a direction that even the doctors in Oakland may not have thought of if we had not taken what we learned here and spoken to them about it.
Once we presented the information that we had been discussing with Andy - the doctors agreed and proceeded with it. By combining two techniques - his idea may have brought about a way to alleviate if not cure AIHA. If this treatment works for little A (I am holding my breath and afraid to jinx it - but it seems to be working) - it may become a standard of treatment and help many other children dealing with the same problems.
Never underestimate what you learn here - and never forget to ask questions if you have them. The answer to your question could save a life.
Sharmin
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