Discussion Forums > Thalassemia Major
Little Ari
Cari:
Thanks everyone! I was really confused about genotype and phenotyping. Some of the info i pulled from our site mentioned to do genotyping first. I spoke to my doctor in Atlanta and she has conversed with the doctor here and reccommended extensive rbc phenotyping be done first as sharmin mentioned.
I have another apptment on thursday - we are going bi-weekly.
Cari:
Ari has dropped to 5.9. We r waiting for another lab to confirm. They r saying they do not want to transfuse?????
Sharmin:
Hi Carisma,
I wonder why they do not want to transfuse him yet ??? Have they drawn the sample for the phenotype testing yet? What I noticed with lil A and his growth during this time was as follows:
birth weight 8lb
1 month 10lb
2 months 12lb
3 months 12lb
As you can see his growth was great for the 1st 2 months - but he did not gain weight between the second and third month. Once he was transfused his growth resumed immediately - he began to feed better and gain weight. For this reason, I had always wished that we transfused lil A earlier. Also, lil A's spleen was slightly enlarged at 3 months - but it became normal immediately after his transfusion and has remained normal since.
Please know that we are all here for you,
take care,
Sharmin
Andy Battaglia:
Hi Carisma,
With thal beta zero, once the fetal hemoglobin supply wanes, the child needs to be transfused, because there won't be any normal hemoglobin at all. This is why the sudden drop in Hb is seen. By age six months, there may be very little fetal hemoglobin left, so transfusions will be necessary before then. Putting off the first transfusion in beta zero has no value and as Sharmin has said, the baby's growth will be slowed. Does your doctor in Atlanta agree about not transfusing yet?
Cari:
The doctor in Atlanta told me he could be going through something called Physiological Nadar?? She suggested to watch his vitals and test him again on Monday. (Sharni - she called after I spoke with you)
The doctor here is going to check him again tomorrow. They did 3 tests today and the 3rd one was not read because the lab said they did not have enough blood. I made an appt to come back monday initially but the doctor called and asked me to bring him in earlier.
The RBC Phenotyping blood was drawn today as well. It looks like he may need a transfusion prior to the test results coming back!!! That worries me but when I spoke to Sharni she said it should be okay for him to take the blood this time without these results as long as they do the genotyping. THe Doctor in Atlanta also mentioned the same thing although she said it would be better to have the RBC results.
My doctors, husband and family didn't really expect his hg to go down so soon...my doctor here refuses to believe that he was that low and that is why they tried to test 3 times. i think i was the most prepared thanks to this site. I have been reading back on posts from the child of Bostonian & Lauryn.
My husband feels that it is bad to transfuse Ari so early because Chelation would start earlier. I'm explaining all angles to him and also explaining that they may not have many or any BETA 0 patients.
I will update on this post via my phone tomorrow after our appt at 1:30pm. Please keep Arii in your prayers.
love, C
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