Discussion Forums > Thalassemia Major
My new born baby has possible Thal major
Andy Battaglia:
Transfusions begin in thalassemia after the hemoglobin level has dropped. The amount of time this takes varies, as during the first 6 months, there is often enough fetal hemoglobin left to maintain a normal Hb level.
ocwoodmanp:
GMeena -
Just wanted to check in and see how you are doing. Hope all is well. We are due to go to Children's Hospital next week for our daughter's transfusion. How is your son doing? Are they monitoring him monthly?
Andy Battaglia:
Hi Meena,
Sometimes the hemoglobin drop is a result of illness, like colds or infections, but it will still require transfusions. Although they have said every three weeks, I am sure that can be modified if the post-transfusion drop in Hb is slow. If he maintains his Hb level after a transfusion, the next transfusion will not be so soon. But even if it is, there is no reason to worry. Chelation, when it starts, can remove whatever iron is built up by that point and in the meantime, I would highly recommend that you pay attention to what we advise about supplementing with antioxidants, as these can help prevent the damage that iron causes. This can make a real difference as you wait until the age when you can start chelation.
There is no reason to believe that he will need to transfuse anymore frequently than what you have been told. As I said, the Hb drop may be related to other factors and once he does begin regular transfusion, there is no reason his frequency would be more often, as long as antibody issues are avoided. Talk to your doctor about genotype matching of blood in addition to phenotype matching, as this can do much to prevent antibody reactions. This is especially important as the bulk of donor blood will be from different genetic backgrounds than your son, so the risk of antibody reaction is higher without genotype matching.
Sharmin:
Dear Meena,
My son received his first transfusion at 3 months of age. His first few transfusions were given at a very slow rate because it is easier on the heart. Because he was given a small transfusion his first few transfusions were given more frequently. After than he settled nicely into a pattern of being transfused every 4 to 5 weeks until he was 8 years old. As Andy has said - please have genotype testing because at 8 years of age my son developed the antibody and his transfusion scheduled went awry causing all sorts of problems that took us 2 years to deal with.
Please keep us posted,
Sharmin
ocwoodmanp:
--- Quote from: momofShreyas on January 22, 2009, 04:51:03 PM ---Hello Ocwoodmanp
We went to CHOP on 20th Jan, his Hb was very low 7.8. They said he needs to be put on a schedule to get transfusion every 3 weeks.
WHen he began getting blood, he developed a fever after 40 ml and they stopped the transfusion and asked us to go back in 1 week to get the rest of transfusion. We are going back on 28 th. Which doc are you seeing. We are seeing Dr.Jennifer Mangino.
Andy sir,
If my son needs such frequent transfusions at this young age, what will happen as he grows older? Will he need even more frequent transfusions. How will he be able to cope with it. The doctors at CHOP initially said, he will not be needing until atleast 8 months old.
I am really worried. Will he be able to take the iron overload.
Thanks
Meena
--- End quote ---
Meena -
We will actually be there on the 28th as well. We are seeing Dr. Smith- Whitley and she has been wonderful with us. We will, hopefully see you there. We get there pretty early since we do everything in one day. We live about 1 and 1/2 hours away so it is the best way for us.
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