Discussion Forums > Thalassemia Major

maintaining hb levels

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Zaini:
Good luck for the tests Emby,everything will be alright Inshallah :) .

Zaini.

Emby:
thanks zaini

Emby:
hi,

got hb results.....older one 6.8..gotta have 1300mls tx.  little one hb 8...having 1000mls tx using old formula.
asked about vit e but was told that it is not normal practice to give to thals over here  but i asked doc to please look into this which doc agreed to.

its not fair on the boys, when their old formula was already working for them...perhaps needed a bit of tweaking, to have inadequate tx then to have a whole lot (sigh!)

God willing, inshaallah,  all will go well tomorrow.
hope you all well.
 

 

Emby:
hiya,

just want to ask if it is safe if my boys are exposed to swine flu?.....spreading like mad here !!

maha:
Hi Emby
Is that formula actually used by your doc? Even when the desired hb is 14 as per the formula my son should recieve 180ml which is exactly 12ml/kg. If the desired hb is 13 then he should have 135ml which is far too less than what he is actually recieving ie 225ml as per the 15ml/kg rule. Your boys problem is just that they are getting less blood than required. My paediatrician also feels 12ml/kg  every THREE WEEKS works the best, but we were more comfortable with 15ml/kg every four weeks. I feel you should talk to your doc about it.

take care
maha

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