Now second transfusion

Hi everybody,
My son had his appointment today after three weeks. He didnt gain any weight and his Hb was the lowest its been so far at 6.8. The old doc was there today also . So hes been put on a regular transfusion again,starting today. I hope it sticks this time. He said the other doc wanted to see if he could maintain at 8 or above on his own as he is intermedia b/c he has some adult Hb. But he hasnt been able to so its better to transfuse, especially as its affecting his growth. I really hope this is what is best for him. Andys post about iron in organs being high even in nontransfused intermedias makes me think its no use to make him suffer at a low Hb . The doc said not to worry about the iron too much as its only tempoary transfusions till he is old enough to try hydroxy urea which he hopes will work for my son.
Thanks for being here to listen to my story.
Zahra

Zahra,

I wish you the very best 

Zaini.

Zahra,

I wish you all the best.

 

Zahra,

Wishing you and your son all the best.  Please let us know if you need and support along the way:) 

Sharmin 

Hi everybody,
My son had hsi third transfusion yesterday. Four weeks after the last one his Hb was already 8.1 so they have asked us to come earlier i.e, in three weeks next time. I was rather disappointed b/c I though that being an intermedia he would have longer transfusion intervals. He is looking jaundiced and unhappy two days after the transfusion but I am not ringing the alarm balls just yet b/c this has happened before and cleared up by the time I got through the wait in the emergency. I hope it does this time too. He looks and acts so different after being transfused its almost like he is another person. besides the change in colour to red he also develops a huge appetite and impatient nature. Usually he is quite laid back. I wonder if that is b/c he doesnt have the energy to protest at his usaul low Hb. His sleeping patterns change also. Yesterdat all his hour or more naps either turned into 15 minute ones or were skipped altogether. Lots of energy I presume. I asked th edoctor what they use for chelation here and when he would need it. he said they use exjade cause it has the least side effects and the least issues with compliance being needed only once a day. Also he said that usually chelation is needed sometime between the first and second year and after at least ten transfusions. With small intervals between transfusions I think we will get there earlier. Transfusions are helping him of course. Her gained no weight in 3 weeks before being transfused but 0.7 kg in 4 weeks post transfusion. Anyone know what transfusion intervals are for thal intermedias? Also has anyone had problems with their marrow turning on again  when they stopped transfusions to try hydroxy urea as they are going to do when he is two years old? Thanks again for all your support.
Zahra

Hi Zahra,

I am sorry if i missed it,but did you do DNA test for your son?
Its good to maintain hb above 10 to help kids grow well,so 10 should be the pre transfusion hb if you are transfusing him regularly.That way there will be less stress on his body and bone marrow.
Children's appetite do increase after transfusion,i have noticed the same with my daughter,and they are more active as there is no lack of oxygen in the body.
I don't think there will be any fixed transfusion intervals for intermedias,if you decide to transfuse him regularly,keep his pre transfusion hb between 9 and 10,if you dont transfuse him regularly,you'll have to monitor his hb constantly,intermedias normally maintain their hb between 7 and 8, with out transfusions.

Zaini.

Hi Zahra,

During the time that your child is being regularly transfused his marrow may be temporarily suppressed, therefore his transfusion intervals will be the same as a thal major.  Your child should receive 14-16cc (per kg of his body weight) of blood every 4 weeks.  As Zaini said his hg should be kept at around 100 (it should not be lower than 95).  This transfusion schedule is best for his growth and his heart.

Best of luck,

Sharmin