Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Manal:
Thanks Gabri :hugfriend
manal
Sharmin:
Zaini,
The nurses at our hospital confirmed that the standard in Canada is to transfuse a child Little A's size 80cc/hr during the first 15minutes and then increase to it to 90cc/hr after that. Although higher rates are safe, it is preferred to adhere to this standard as it allows you to stay in control of the situation. For example, if the child did not react well to the blood - you would know before a significant amount of blood has been administered. Also, it is easier on the child's heart to transfuse slowly. The nurses were not able to confirm if there is any association with the size of needle used for a child this size - and the possible damage to red cells if the speed were to be increased (I believe that I have heard this before) - so that is something I will need to confirm.
Sharmin
Zaini:
Sharmin,
Thanks for the info,my daughter's transfusion is on coming saturday,and i am determined to give her a slow transfusion,i'll manage to go for 3 hours per unit,i just want to check if hb stays longer that way,she is still on carao,and her grand father has asked his friend to order more,but to tell you the truth i am a bit confused now,what with every one emphasising on biweekly transfusions and i was trying to extend the interval during her transfusions,although bi weekly transfusions are not an option for us due to cost problems,but i keep wondering if it was better to let her transfuse every three weeks ??? ???.
We have an appointment with her hemo today,can you suggest any question i should be asking,it's in the afternoon,sorry for the late question.
Zaini.
Andy Battaglia:
Zaini,
Since your daughter is intermedia I would not suggest more frequent transfusions. It should be based on her Hb each time.
Sharmin:
Zaini,
For now I think that the most important thing to manage is the volume and rate of blood transfusion. If you are on the 4 week schedule make sure that she is getting 14 - 16cc/kg (to the nearest whole number). The rate should begin at 80cc/kg and after the first 15 minutes it can be 90cc/kg. Here we hang one unit of blood up to 4 hours.
In our son's case we are trying to limit his transfusions to whole units for now rather than breaking into a second unit for a few ccs of blood - we are trying to limit his exposure to donors because of his past experience with antibodies. For that reason, it is worth it for us to go in every 2 to 3 weeks because we are getting a smaller volume of blood each time.
For most children the recommendation is still what I listed above. I will talk to the docs in Oakland about this during our next appointment. My curiosity about this was raised when I spoke with parents in NY and further when I listened to Dr. Wood and Dr. Vichinsky's lectures.
Most of the benefits my own perception, the accepted standard is still the monthly transfusions.
I will let you know what they say in Oakland about this:):) I really hope that they pay attention to the rate from now on:)
Sharmin
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