Discussion Forums > Thalassemia Major
Transfusing BabyI tomm. A bit worried
Andy Battaglia:
Hb should not be allowed to drop below the 9-9.5 range.
Pratik:
--- Quote from: Andy on February 16, 2013, 03:23:22 PM ---Hb should not be allowed to drop below the 9-9.5 range.
--- End quote ---
I agree. As we were discussing pain issues a couple of days ago. Tomorrow, my tx is scheduled and I'm having bad pain in back, head, my jaws and the Hb is 9 as of today, so even 9 is now very low for me. I try to keep my pre tx Hb above at least 9.5 since couple of months.
So definitely, keep your child's Hb above 9.5 and keep chelating!
-P.
Andy Battaglia:
Pratik is correct. There is absolutely no advantage to waiting for transfusions. Any doctor following a different routine is not keeping up with advancements in treatment.
BabyI:
Thanks for the responses. Then I'll tell my doctor to do the transfusion because she said she will do it if my baby isn't well. I don't chelate yet since she is 6 months. One question, are there benefits or risks to waiting too long before transfusion? I mean if I extend it will my baby be negatively affected? If so then I would do Tx on e she reaches 9.5.
BabyI:
Hello everyone,
So far my baby has been transfused 3 times. All went fairly well and she was poked one time only. Well this last time went terrible. She was poked 5 times and although they got the vein, it burst and wasn't useful. It was difficult to see especially the last poke. They got her on her hands, arms and feet. It was disturbing to see but you stay strong and try to distract the baby. After the 5th poke I called it off and said I'll be back tomm. The nurses agreed. They had pediatric stat nurses to do the pokes. But like I said they got the vein but it burst. They even got an ultrasound after 3 pokes. I'm going tommorrow and praying it goes well. Seeing her go through it is heartbreaking. But I thank God that we have it better than many so I should never complain. The nurses kept asking if I considered a port. I don't want to see that in her. Besides infection and blood clot, it's a mental issue. With transfusions you go that day and you leave and live your life normally. Seeing a port in you makes you think about it all the time. I wish they would stop suggesting it as if I am the one making her go through this. How do I politely tell them to stop suggesting it? Is there anything I can do to help her veins from popping (if that's at all possible)???
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