Discussion Forums > Thalassemia Major

Some good news!!!

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Zaini:
Hi Manal,

No we never checked for anti bodies,her doctor doesn't think that her transfusion regimen has something wrong,so she never suggested it.I'll ask the ward doctor this time.

Sharmin,

About the blood,sometimes it's fresh,and sometimes it's a week or 15 days old,not more then that,and i don't know if genotype testing is available here and please to my dumb brain explain in easy words what exactly is genotype testing?

When ever i ask any doctor about decreasing transfusion intervals,either her ward doctor or her hemo,they say that as she grows she'll need more blood,right now she gets 450 ml every three weeks approx,which comes in between 15 to 20 ml per kg,as her weight is 26 kg.

Zaini.

Sharmin:
Zaini,

The blood volume you describe is not very much for a growing and active child, 15 to 20cc/kg every 3 to 4 weeks is what is expected for a child that age.  Because you are keeping good records, you must have noticed the change in her tx frequency, her pretx hg and her general appearance before a transfusion.  For this reason some parents elect to transfuse every 3 weeks during their children's growth spurts.  My only concern would be to ensure that her chelation dosages are increased, not only according to her growth but also according to the increased of blood volume(cc/kg) that she is receiving.  It is always better to stay on ahead of the iron, it takes iron far less time to accumulate then it takes to remove it. 

I am not sure if phenotype or genotype matching is available in Pakistan.  Even in North America there are very few labs that do it, the routine is to do the blood test and then to have it sent to a lab in another city.  Is it possible for your doctor to send it to the US?  My son has had blood samples sent to the US and even to UK from here.  Even the phenotype testing for a chronically transfused child requires testing using multimillion dollar equipment which seperates donor cells from host cells - and then finds markers on the host cells.  I don't know if this equipment is available in Pakistan either.  Again, perhaps it would be a good idea to have the blood test sent abroad.  Maybe Andy knows more about this. 

Because your daughter is being transfused in Pakistan, she is less likely than my son to develop antibodies.  My son is of East Indian decent receiving blood from a pool of predominantly European decent.  Although people can develop antibodies even when the donor pool is less foreign, it is less likely to happen.     

When my son was needing more transfusions, our doctor was quite particular about only giving him very fresh blood because it is likely to last longer in his body.

I hope that helps,

XOXO - I think Zainab is doing great - and growing like she should  :hugfriend

Sharmin

Zaini:
Thanks Sharmin,

Chelator's are adjusted according to the body weigh if i am right? she is taking desferal thrice a week,1 gram per night,and ferriprox thrice daily,which makes 1500 mg daily,and she weighs 26 kg,is that dose enough?

Zaini.

Sharmin:
Hi Zaini,

I am not familiar with L1, so maybe Andy can help us out with this one.  I doubt that her iron levels have climbed yet, but it is just something to watch out for in the future.  Our doctor was increasing my son's desferal according to his weight, but he forgot to factor in the increase in blood volume when he was being transfused more.  During the two years he was being transfused 20cc/kg every 2 to 3 weeks, but his desferal was only marginally increased (as per his weight over the two years).   I drove the doctors crazy asking about the ferritin each time we had a transfusion, but they would just chuckle and say there is nothing to worry about because the ferritin is below 2000.  It wasn't until we went to Oakland that we realized that the doctors were not compensating for the increase in blood volume my son was getting and the SQUID test revealed iron overload. 

I am learning about Exjade doses, but I'm clueless when it comes to L1, 

Sharmin

Andy Battaglia:
HI Zaini,

The standard dosage for Ferriprox tablets is 75 mg/kg per day, taken in 3 doses total. So, at 26 kg, the dose would be 75 x 26=1950 mg daily. Depending on what her ferritin is, it may be time to bump the Ferriprox dose up to 2000 mg daily. Talk this over with your doctor before changing the dose of Ferriprox.  I would also like to point out that Apo Pharma has released a Ferrirpox oral solution that has had significantly less gastric side effects than with the tabs. I will find out if this is available in Pakistan yet. Again, based on ferritin levels, an alternative would be to either add one more night of desferal each week, or extend the length of time for each desferal session. 

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