Discussion Forums > Thalassemia Major
Little Ari
Zaini:
Good luck with everything Carisma :goodluck Sending prayers for you and Littel Ari .:hugfriend
Zaini.
Sharmin:
Good luck Carisma, I am glad to hear that his hg is holding still. I still believe that he will need to be transfused soon. Has the doctor mentioned what hg level he would be willing to transfuse at?
Take care :hugfriend
Sharmin
Bostonian_04:
Carisma,
Did Ari's hemo mention when they will start transfusion? Hb of 6 is low for a growing infant when you know he is beta 0. In Boston, they started transfusion when our daughter's Hgb went below 7.0.
I am glad to know that Little Ari is doing well and he is keeping you busy. Good luck with every thing.
Cari:
Just wanted to give an update as we went to the doctors today. Ari's hg is still at 6. The doctor does not want to transfuse him as he still believes that the hg will go up. He wants me to come back in 2 weeks. I scheduled to come again next week.
Ari is doing well. He seems to be eating well and he is now 12lbs. He was 11.5lbs the week prior to thanksgiving.
I contacted Dr. V. in Oakland and spoke to his nurse. She said that they are doing the right things and i shoudn't worry. She also mentioned that I genotyping was not neccessary since he was not a polytransfused patient. I had her read all of your posts on this discussion.
One question on my part to all - does genotyping tell you what TYPE of deletion the child has? When I spoke to Dr. V's nurse I mentioned that my husband and i had tests done prior to conception that confirmed that we both had the 619 deletion and the amnio confirmed the 619 deletion for Ari.
The only test she said we should do is the Alpha Globin mutation.
I am so confused once again. I just want to make sure Ari gets the best treatment early on and right now I just feel like i'm not sure what I can to do help move things along. He is definitely pale and I am waiting for the day i can see some rosy lips and cheeks.
Love to all.
Keep Smiling:
Insha Allah, that day will come very soon..
wishing u Luck!
Abbas
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