Discussion Forums > Thalassemia Major
Little Ari
Cari:
Thanks Andy, so far Ari looks fine. He is a little pale but he's eating, smiling and awake all day. He wont even nap!!! :) always wants to look aroundl. I want to take him back this week regardless. I was thinking on Tues....do u think I should even attempt to if he is still okay?
Dori:
What is beta zero? :huh
Andy Battaglia:
Carisma,
I feel that unless there is a noticeable change in Ari's looks or behavior, that they will not transfuse until a second blood test at least two weeks after the first, confirms the low Hb, because he is at the age when Hb level may not be totally accurate because of the nadir period. What remains to be seen is how much HbF he will still be making. He looks good in his FB pics.
Dore,
Beta zero is when both beta globin genes are deleted and no normal adult hemoglobin (HbA) will be made at all. The only hemoglobin will be fetal hemoglobin, which normally disappears for the most part by six months of age.
Cari:
Just an update...Ari seems to be doing okay these past few days. He is definitely very pale but he is overall very alert so it is so confusing! Yesterday he was so alert and awake all day (God bless him) :) playing and smiling. THe only thing is that today he was a little more tired and did not eat as well. I get confused because i would think he WOULD be tired after being so active the day before...right?
I don't know...i am going to watch him tomorrow and see how he does.
Cari:
One more question just to clarify something. I'm sorry if this is repetative info but i am so confused.
I've been reading back on posts on genotyping. I requested to have this testing done before the transfusion started and the doctor told me this was called the RBC phenotype test. THe other links i've been reading here keep referring to genotyping to get the most accurate match and prevent antibodies in the future. I believe some areas state that it is genotyping that cannot be done after the first transfusion. I know Sharni mentioned that the RBC phenotype is the correct test but what is genotyping then? Do they automatically do this before every transfusion? I want to make sure I am asking for the right things before the first transfusion if there is something else I need to ask for.
I don't think i mentioned that my doctor here did not have much information on RBC phenotyping!!!?? They were actually looking through a book to see what they needed to get from Ari. THe blood bank was also not aware of the testing!!! Luckily my hemotologist in Orlando contacted the one from Atlanta and they contacted our blood bank and sent them anonymous results of the tests so that the blood bank was aware of what to look for.
This has scared me and now i know i just have to be on top of my game in order to get the best treatment from Ari.
Also, are there any links to the transfusion process for babies on the thalpal site? I have been searching but haven't found it.
Thank so much - love, C
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