Discussion Forums > Thalassemia Major
Little Ari
Sharmin:
Thank you for your kind words Lena. We received some very good guidance when our son first started transfusing and it proved to be very helpful. Since the antibody and the treatments he has had related to the antibody - we have not been able to manage the emotional part as well. I hope that we can get things back on track soon. I appreciate your encouragement and all of the advise that you have given me - it will make a big difference.
Charishma, I hope that things are going well with little Ari. I have been thinking of you and hoping that all is well. Please let us know if we can help with anything at all.
Sharmin
Cari:
Hope everyone had a great thanksgiving :) Little Ari had a lot of family madness these past two days...I don't think anyone can get enough of him. Poor boy is exhausted but he is doing good. I spoke with his doctor on Wednesday and he told me to bring him in to the emergency room if I thought i needed to. He said he would transfuse if his level had dropped but it was best to wait until monday. Not much help for me...
While i had him on the phone I asked about genotyping...he said that there is no such thing as an RBC Genotype test and that we had done the phenotyping and that was all we needed.
Now, I dont know what more to do. I sent him all the info about both tests that I gathered from this site 2 weeks ago...
Andy, the center is the one referred to me by Eileen while I was pregnant. I had actually visited dr. boudreaux there in June. When I spoke with her last week RBC Phenotyping was the only test she mentioned that I need to have done and she did guide my doctor through this. Luckily my doctor responded to her. How do you think I should go about getting the genotype testing done?
I am afraid at this point that the transfusion will be done before the genotyping will be done.
Sharmin, I am sorry i missed your call! We celebrate thanksgiving on wed with one fam and on thursday with the other so it's been a busy few days.
Also, regarding lena's comment - I am blessed to have such great support from everyone on this site - especially sharmin. My son has the same type of thalessemia as Little A. Her guidance has kept me stronger than I would have been through all of this if I was by myself and for this I am so greatful. Seeing Sharmin and her family has kept my husband and I so positive about Little Ari's future.
I know that Sharmin went through the beginning with Little A alone - I CANNOT imagine that. I am so so so blessed.
Andy Battaglia:
Hi Carsima,
The purpose of DNA genotype is to supplement what the phenotype matching can do. With genotype matching, you can make sure the blood is closer to your own racial or ethnic group, as these groups have characteristics more unique to that group. When the donated blood does not come from the same racial group as the recipient, it does increase the possibility of picking up one of the more rare alloantibodies that are not elimintaed with phenotype matching. However, because this happens when the recipient is living where there own racial group is not native, it becomes harder to find blood that is from your own racial group, so it is often not practical to try to find genotype matched blood. When there is a case like little A where the alloantibody has resulted in an autoantibody reaction, it is extremely helpful if genotype matching can be done to avoid introducing anymore of the more rare alloantibodies to the blood.
The general consensus now is that genotype matching, although an important part of the blood matching process, is not completely practical because of the difficulty in finding blood that totally matches the genotype. There is some hope that in the future, those at risk for alloantibody reactions will be able to be identified so that genotype matching is also done, but this is still just in theory.
If your doctors are interested in learning more about genotype matching, please show them the link to this article, which was published this year.
http://bloodjournal.hematologylibrary.org/cgi/content/full/114/2/248 I'll print the conclusion here.
--- Quote ---DNA-based blood group typing provides a valuable adjunct not an alternative to traditional methods of pretransfusion testing. Traditional methods for ABO and D typing are likely to continue, and methods for antibody detection and identification will still be required. Theoretically, it is possible to match patient and donor blood group genotypes electronically with the use of gene chip technology. However, this assumes DNA-based methods are totally robust, which they are not because novel mutations arise continually. It also assumes the blood available for transfusion at any given time will match all patients' blood group phenotypes for all possible polymorphic antigens capable of stimulating clinically significant antibodies, which is unrealistic. Tandem application of DNA-based methodology and existing methods will however provide improvements in the provision of extensively blood group–phenotyped red cells for patients with alloantibodies.
--- End quote ---
And thank you. Your words about how much difference this group can make to new parents means a tremendous amount to me. As a parent, I can really appreciate what that means and it tells me that we are really fulfilling one of the major goals of this group, and that is to help parents get through that period when they first learn of their child's thalassemia. One reason I have chosen parents as moderators is because they have lived through it and are in good position to help new parents go through the same experience. I am very happy with the ongoing efforts of our moderators and our members, who all do so much to help others, even though there is no reason they have to help anyone. But to me, it's all part of being good humans.
Sharmin:
Carisma,
I hope that Ari is doing well. Please keep us posted on his hg and what the doctors are deciding to do.
Little A had his genotype testing done November 2008. If you contact the Oakland clinic (I have sent you their phone number) - they can send you the information needed for genotype testing.
Please let me know how it goes,
Sharmin
Cari:
Hello All,
Ari's hg is still at 6. They still do not want to transfuse and have the hope that he is going through the nadir. I have told them that is unlikely as he is a beta 0 and explained the info sharmin gave me but the doctor says that his vitals are fine so it should be fine. I don't really know how to handle the situation and make them change their minds on this issue. I will continue to watch Ari and I am schedueled to go back in a week and a half.
As far as genotyping, I have somewhat good news. My doctor will review the information Andy has sent. He also knows dr. V from the oakland center and has told me he will contact him to get info. I will also contact him tomorrow.
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