Discussion Forums > Thalassemia Major
can someone help me out?
InGreece:
I'm jumping in a bit confused here sharmin:
First of all great news about you son! I know the feeling of having some good news under such circumstances
Sophia also has hemolytic anemia on top of thalassemia -it surfaced after 6months of transfusions.
However the treatment selected has been different.
After spending about a month of being transfused every 3 to 6 days (her Hb was falling THAT rapidly)
-during which time the labs tried unsuccesfuly to identify the specific caused that brought on the onset-
Sophia was placed on cortisone therapy in order to supress her immune responce.
After about another month this had results.
8 months later and after gradual reduction she is still on a very small dosage on a daily base. (about 1mg a day. smaller doses provoke an immune system reaction) and is transfused every 14-16 days now.
I have to say I have strong mixed feelings about cortisone.
WHile the type of cortisone (prednisolone family) is similar to the one used in relatively stable long term usages (e.g. asthma sufferers) having our 2 1/2 year old daughter on chronic cortisone is so unsettling to us that I'll can tell you it's probably forcing our hand in working towards a BMT solution.
In your case you seemed to be able to avoid the cortisone. How did you do so?
I'm probably missing something glaringly obvious here and I'd be glad if anyone pointed it out.
Thanks and God Bless.
InGreece:
DUh!
As Bart (Simpson) said.
Just found the obvious myself....
I only now realised that you wrote in your initial post that your son is on prednisone which I assume is alsmot identical to our daugter's medication
Cortisone more or less equals prednisone
Looks like we are on the same boat and have the same concerns about if this is chronic...
God Bless
:-)
Sharmin:
Hi InGreece,
Yes, my son is on prednisone - he began prednisone at 8 years of age. The antibody was first detected when he was 7 1/2 years - he was requiring transfusion every two weeks - and his hemoglobin was dropping more each time. The lab identified a warm autoantibody. He was started on a high dose of prednisone 40mg a day for 4 days - and then slowly maintained at 10mg alternate days. I am also uncomfortable with having him on a steroid on a regular basis - on top having thalassemia and being on desferal.
I am not thinking about BMT at this time because transplant should not be taken lightly, especially with a child like mine who is doing very well on the whole, so far. And he shows heightened immune response - with various antibodies both allogenic and auto - it suggests to me that he would be more likely to have issues with BMT. I am hoping that one of the technologies being investigated - although they may be far away for now - will be the solution for us. In the meantime I am trying to do everything I can to give him the best care. I think that our children are doing well despite thalassemia and antibodies - as they are being well managed.
Best of luck to your little girl. I hope that the antibody burns itself out and you have a lot less to worry about:)
Shamin
Sharmin:
I started my son on 1mg of folic acid, 100 IU of vitamin E as well as calcium magnesium this week.
I will wait a few weeks before starting the wheat grass extract, as it may be too many changes at once.
I am hoping this will help with his growing pains too.
He is complaining of tummy aches - could this be his stomach getting used to all of the supplements?
Sharmin
Zaini:
Zainab also complains of tummy ache often,and i,ve noticed that these complains have increased after last transfusion as compared to before transfusion,Don't know what's the reason though :dunno.
ZAINI.
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