Discussion Forums > Thalassemia Major

Transfusing BabyI tomm. A bit worried

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Pratik:

--- Quote from: BabyI on February 13, 2013, 04:37:40 AM ---It's been four weeks now since the transfusion. Problem is how do I know when to transfuse again??? Her hemaglobin was 10 at two weeks after transfusion. But I notice she is increasingly cranky at around 3 weeks. But I'm not sure if its baby stuff or thal related. Now at 4 weeks she is increasing the crankiness and today hardly slept. I think doctor should have checked hemaglobin at 3 week as well. I am a bit confused. Are we suppose to go by hemaglobin numbers only to transfuse next? I mean I don't know if she is teething, having a bad day or needs a transfusion.  It's so hard trying to figure it out. And aren't we suppose to transfuse BEFORE she reaches the crankiness stage??? I'm a bit lost. Please advise. Thanks!

--- End quote ---
I definitely think it's her transfusion time. When I was young, my parents used to check the redness of blood vessels deep under in my eyes and from that they knew that now it's time to transfuse. Also from the lips. Now, it's a standard routine for me, 3 weeks - 500 CC blood.

And teething is definitely one of the symptoms, when my Hb is low even today (as in whenever) I feel like crushing my teeth or holding them tight and it turns out in low Hb. Never let your child's Hb go down below 9, or keeping above 9.5 or 10 is best!

-P.

BabyI:
I went to have her checked today. It was 9.5. She said we can transfuse next week if I wanted. She said 9.5 is fine. What do you think???

Bostonian_04:
when we started the Tx for our daughter, we went every 4 weeks (we still do)...the goal was to keep Hg above 9.5 ...some try to keep it above 10.0. you don't want her Hg to fall too low. Too low Hgb stresses the body and also affects the quality of life. So, may be schedule every 4 weeks Tx and see how Hgb is doing after few months and then adjust her Tx schedule. it becomes a routine afterwards...

BabyI:
My doctor said wait until its 8. Is that too low?

Princess'M':
Oh I just read this thread after the other one about our babies. I will tell you that being thal minor and during my 20s my hemoglobin has ranged from 10-10.5; and for mostly this last decade I have felt weak/low/tired 24/7. I just push through it and never let it hold me back but my point is; babies' bodies and minds are developing at exponential rates; I think when princessM starts transfusing I wouldn't let it fall below 10 either as Bostonian said.
PrincessM's Mama

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