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
ABOTU GENOTYPE :please check this thread as well , her is the link .
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.Quotehttp://www.thalassemiapatientsandfriends.com/index.php?topic=2231.0;highlight=genotypeThis 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.
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.
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
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
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
| Phenotype Genotype A AA or A0 B BB or B0 AB AB 0 00 |
I have sent her the links from here and argued, if that test does good to the patient why not do it.
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
And I'm going to add something here that I believe is extremely important for thals but has been largely ignored. Studies have shown that those who are low in magnesium have a higher rate of gallstones. That alone is very interesting but when you put it in the context of thalassemia, a path develops. When I read about this study, I asked some questions.
What are gallstones caused by? Excess bilirubin.
What causes excess bilirubin? Hemolysis-the breakdown of red blood cells.
What is common here? Magnesium.
Magnesium depletion in RBCs causes a breakdown of the RBCs, creating bilirubin, which builds up and eventually leads to gallstones. So the question arises.
Can magnesium supplements slow down hemolysis and help to prevent gallstones? I want to know and I hope some patients will give this a try and see if their bilirubin levels change at all after magnesium supplementation. I do feel that magnesium should be taken with calcium and vitamin D, so please, do use all three.
We are breaking new ground in this group and if patients and parents are wiling to try, we will get answers to many questions. We are becoming a real force in the world of thal and I do mean we. Our community can lead and help improve life for thals around the globe.
I believe that this forum has thaught me how to manage and extended my life, I have not look back .Since I joined this group,it gave me strength, I have been able to ask for the required care from medical Professionals,
I have been able to get my illness under control ,
I've learnt so much about my condition and still learning.
To top it all , I've met some wonderfull people that enhance my life,
For all the above I am full all gratitude
For me personally ,It is special and I do love everyone of my friends in my own special way.
I feel richer for it Thank-you, to everyone for being there when I needed you the most
You know who you are no need to mention names
I am totally going to brag - little A's team lost 3 - 1 today - and little A had the only goal for his team. He is scoring at least 1 or 2 goals every game. This is the same boy who was having a hard time keeping his hg and energy up last year. You cannot imagine the confidence it gives him to be good at something and to contribute to his team this way - thank you all so much for helping my little guy get here. Every child with thal can reach their dreams and be their best!
Just yesterday,my sister was laughing her head off,what happened was that my cousin ,who is a doctor,came to our place,and i was asking her about genotyping,she said it's kinds DNA analysis,i said yes i know and it's done on WBCs,she said WBCs? no RBCs!! I said but RBCs don't have a nucleaus,you must know that,and she got so embarraced and said yes i forgot.My sister said oh you can't win my sister she loves biting doctor's heads off now a days, and she can do that beacuse she keeps searching and learning,while you doctors have stopped doing so .And this is all due to this forum
What is a bit strange is that the Osteocare i am getting here,it's pack is different from what is shown on site,and even the formulation isn't same,On site it says it contains Manganese,Copper,Selenium and Boron too,but the pack i got says Calcium,Magnesium,Zinc and Vitamin D only?Any thoughts?
Osteocare Original 30 Tabs
A formula to help maintain healthy bones, Osteocare® Advanced is Britain’s most popular calcium supplement, with the exact recommended daily allowance of 800mg calcium and 300mg magnesium plus vitamin D and zinc to protect bones.
yeah in my presence any out sider annoy you people i cant tolerate it , and i will never let it happen ( its my job only ) ...
Energy, Protein, Fat, and Carbohydrate Content Negligible
Home > Retail Outlets > Worldwide UK I Worldwideyup its mean they only supplie's " Visionace " ( one of vitabiotics's product) tto Pakistan . .ou may check the link :
Country: Pakistan
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Visionace
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