Discussion Forums > Thalassemia Major
can someone help me out?
Sharmin:
Hi friends, :hugfriend
I'm becoming a little concerned about my son's antibody. This warm autoantibody has persisted for over two years now - we had hoped that it would disappear by now. He has been on prednisone for 2 years now - and this is only keeping it under control such that he is transfused every 3 weeks. If there is an illness, his hg will drop quicker.
Does this mean that this antibody has become chronic and will persist or that it will be associated with a more globalized problem? He looks well, and is very healthy. His spleen is not enlarged and he looks and acts great.
However, I am very concerned due to this antibody. Some of the new avenues of research for thalassemia also suggest that they can help with autoimmune issues - autoimmune hemolysis (which is what my son has). Is it possible that if he is cured of thalassemia, that he may also be cured of the autoimmune issue?
I am comfortable with the thalassemia, and hopeful that the treatment will get better soon - but this autoimmune issue has left me very much afraid. Can someone please help! Thank you.
Sharmin
Andy Battaglia:
Hi Sharmin,
There aren't many treatments for hemolytic anemia other than prednisone and splenectomy and I don't think your son's condition is bad enough to be talking about splenectomy at this stage. Usually that won't be considered unless the spleen is quite enlarged and transfusion frequency is one week or less. Two things I did find are use of folic acid (what dose is your son taking daily?) and slowing down the rate as which blood is taken.
http://www.emedicine.com/med/topic979.htm
--- Quote --- Administer packed RBCs slowly to avoid cardiac stress.
In autoimmune hemolytic anemia (AIHA), type matching and crossmatching may be difficult. Use the least incompatible blood if transfusions are indicated. The risk of acute hemolysis of transfused blood is high, but the degree is dependent on the rate of infusion. Slowly transfuse by administering half units of packed red cells to prevent rapid destruction of transfused blood.
--- End quote ---
I don't know if this has been tried yet but it does seem to slow down the destruction of transfused red blood cells.
I would also suggest vitamin E and low dose of vitamin C daily (100mg), as both make for healthier circulatory systems. Do not exceed 100 mg C for a child his age. Thals often totally avoid vitamin C but if taken between meals, it will not add to iron absorption and thals are universally deficient in C. Low doses daily are no danger and will help the vitamin C starved body.
Sharmin:
Thank you Andy, I have had some anxiety over this issue for a while.
My son is not on a folic acid supplement - what dose would be appropriate for him (his current weight is 25.5kg).
He is also not on vitamin E - can you also suggest a dose? He is on vitamin C - he gets 100mg with his desferal nightly.
The doctor has told us that the antibody seems to be slowing down over time, which gives me some hope, but it has not gone away yet. Apparently, hitting the body with intermittent high doses of prednisone can sometimes shut the antibody right down as well.
In the meantime, I will mention to his doctor that maybe we can try to slow his transfusion rate down. Currently, he gets 20cc/kg - at a rate of 90/hr. He gets 1 and 3/4 bags of blood. Maybe we can split the transfusion between 2 days or something to make it last longer - 1 unit every two weeks may last longer than almost 2 units every 3 weeks. So far your ideas have made a big differnce - maybe this will help out too Andy.
Who would have thought that a child with thal major would also develop hemolytic autoimmune anemia?? The doctor says that the two are completely unrelated - and perhaps someone who makes their own blood may not notice the small amount of hemolysis - but in a thalassemic - the transfused blood cells are being broken down - meanwhile the body is unable to replace them - resulting in an increased transfusion requirement.
No matter how strong we try to be, I think some days we can get shaken up. Especially when unexpected issues arise. Hopefully, with our prayers - and the prayers of all of our friends on this site - this pesky antibody will go away soon.
Sharmin :pray :pray :pray :pray :pray :pray :pray :pray
Manal:
I am sure Sharmin, that God will answer all our prayers and your heart will rest. I am praying for him and please try Andy's suggestions, i am sure they will make a difference. Please keep us informed
Manal
Sharmin:
Thank you Manal, you are a great friend :hugfriend
Andy's advice has helped us avert so many crisis in the past - i am sure it will help us overcome this roadblock too.
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