Discussion Forums > Thalassemia Major
My new born baby has possible Thal major
momofShreyas:
Hello all,
I have read the posting from Avasmom. Mine is the same case. I had a baby on 10/10/08 and 4 days later the lab results say he is a possible Thal major. We are getting the testing done at Children Hospital of Philadelphia. I am devastated, but more than anything, I feel I dont know much about the disease. I have read in the posting about 'port', what is that? What is genotyping, do I specifically ask for that.
Is it very risky to opt for Bone marrow transplant. Is there any hospital , that can do a fetal selection based on a HLA match, if I conceive another child, (This is my first one).
Please give me as much info as possible.
Thank
Meena
nice friend:
--- Quote from: §ãJ¡Ð ساجد on July 19, 2008, 03:03:04 AM ---
Yes,
Ports have to be implanted by minor surgery. It then provides an access point to which you can insert needles painlessly.
It requires some maintenance in terms of flushing it so that blood does not clot in it and bacteria does not start to cultivate and eventually enter the body.
It's not suitable for hot climates as sweat may infect it (unless you keep cool and clean)
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here is the link to read complete thread about Port ...
http://www.thalassemiapatientsandfriends.com/index.php?topic=1890.0;highlight=port
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--- Quote ---ABOTU GENOTYPE :
here is a thread link please check the complete thread to understand it exactly ....
Children who receive multiple transfusions may over time develop sensitivity to certain antigens in foreign blood, and may begin have reactions to them or developing antibodies to antigens in foreign blood.
--- Quote ---http://www.thalassemiapatientsandfriends.com/index.php?topic=2231.0;highlight=genotype
Genotype testing entails testing to genetically find what antigens the recipient actually has, and also to determine the antigens which are absent. This information is then used during the crossmatch process, thereby the donor and recipient are more closely matched on many levels. This reduces the likelihood of reactions and antibody related hemolysis. The recipient's body is likely to recognize the donor blood as it's own - because it is so closely matched. This can also make finding a match much easier, because the blood bank will already know which antigens that the recipient has - therefore they do not need to be tested for in finding suitable donor blood.
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This is the only way to protect your child from making multiple antibodies, and make the cross matching process easier. This step can aid in preventing complications in the future. It can also prevent transfusion reactions and antibody related hemolysis.
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please check this thread as well , her is the link .
http://www.thalassemiapatientsandfriends.com/index.php?topic=1660.0;highlight=genotype+testing+sharmin
ITS SOMETHING RELATED TO BMT :
--- Quote from: Andy on October 29, 2008, 12:16:17 AM ---It's amazing that the father was a perfect match. I am very happy for your family. We have some other members whose children have also had BMT and some members who have gone through it themselves. It's encouraging to hear the success stories and to see the success rates climbing. In spite of the cost, BMT is becoming a more attractive option. The long term health care costs of a thalassemic will greatly outweigh the cost of BMT and aftercare, so if the cost can be worked out, it should not be an influence on the decision to have a BMT. With success rates topping 90% in Italy, there is much reason to expect higher success rates around the world. While we wait for gene therapy trials to really get moving. BMT is becoming an option that more people should explore.
I look forward to hearing reports on your son as time passes.
here is the a link below , please check this link read complete thread to
understand exactly, about the BMT .
http://www.thalassemiapatientsandfriends.com/index.php?topic=2217.msg19809#msg19809
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please check this post its about " Ideal age for a transplant " .
http://www.thalassemiapatientsandfriends.com/index.php?topic=304.0;highlight=bmt+90
i hope it will help you alot ...
Best Regards
Take Care
Umair
Andy Battaglia:
Hi Meena,
First thing, you are in very good hands at Philly Children's. Dr Cohen is one of the top thalassemia specialists in the world and Children's is one of the Comprehensive Care centers in the US. If it does come to it that your child needs transfusions, do talk to them about genotype matching before the first transfusions as this can help to avoid many problems down the road. Ports are used in patients whose veins are hard to find to take blood and sometimes for desferal. They are not mandatory and you should not allow yourself to be pressure into having one implanted in your child. Many doctors will push for ports to make things easy but they are not necessary in most cases and can be a source of infection and clotting. BMT is an option. There are risks including risk of death, but success rates are climbing and it is becoming safer. It is a tough decision to make but it is best to decide this before many transfusions are given as there is less chance of rejection if it is mainly only the patient's own blood circulating. Matching can be done in advance through In Vitro fertilization or in the womb with HLA matching. This is often done to find a match for a BMT.
Keep us posted on how things progress. We will help in any way that we can.
Sharmin:
Hello Meena,
I wish your little boy all the best. I am sure that he will do great with proper treatment, I am glad that you are going to be at a good clinic. As per some of the advice we gave Avasmom http://www.thalassemiapatientsandfriends.com/index.php?topic=2230.0
I personally would not have a port put in my child. My 10 year old does well without one. Your doctor may offer you genotype testing, if they do not then you should ask for it. You should have it done soon so that the information is available if you need to transfuse him in the future. Genotype testing is a blood test, and the turn around for results is pretty quick these days.
Wishing you all the best - I know that the first few weeks are very difficult after your child has been diagnosed. Let us know if we can help you in any way during this time. We are here to guide you through your son's treatment so you are not alone.
Sharmin :hugfriend
Sharmin
avasmom:
--- Quote from: sharmin on October 30, 2008, 02:51:56 AM ---Hello Meena,
I wish your little boy all the best. I am sure that he will do great with proper treatment, I am glad that you are going to be at a good clinic. As per some of the advice we gave Avasmom http://www.thalassemiapatientsandfriends.com/index.php?topic=2230.0
I personally would not have a port put in my child. My 10 year old does well without one. Your doctor may offer you genotype testing, if they do not then you should ask for it. You should have it done soon so that the information is available if you need to transfuse him in the future. Genotype testing is a blood test, and the turn around for results is pretty quick these days.
Wishing you all the best - I know that the first few weeks are very difficult after your child has been diagnosed. Let us know if we can help you in any way during this time. We are here to guide you through your son's treatment so you are not alone.
Sharmin :hugfriend
Sharmin
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