The heart in transfusion dependent homozygous thalassaemia today

Hi Zaini,

Better have the Hb checked at the usual lab using the usual way as every machine has it's own calibration.

Hi Zaini,

While Zainab's Hb has remained high, what has been your observation of her health and physical appearance? Does she seem to be at the level she would be when her Hb is that high after a recent transfusion? Sometimes I think your own observations are as important as tests. If she is doing well, it is a very good sign that the things you are doing for her are helping. I don't want to make too much of this yet but it will be very interesting to see how she does in the coming months in terms of Hb and ferritin level.

I am happy that Zainab's hg is holding up.  Is this possible because she is thalassemia intermedia - not major? Is it possible that she is reacting well to the natural fetal hg inducers?  Whatever it is, the fewer transfusions she receives the better it is for her.  I wish the little sweetheart all the best. 

Hi Sajid,

Yes i will get her hb tested from Aga khan lab tomorrow.

Andy,

Like you said,I don't want to make too much of this either,but my observation is that Zainab's skin is way lighter then usual,towards fair complexion,plus her tummy was not as flat as any normal kid ofcourse,but what i've noticed is that it's going back to normal,and usually in the last week before her transfusion she used to be cranky,crying most of the time,fussing all the time about this and that,but that's not the case right now, she is behaving normaly,and when i went to that physician he told me to pull her lower eyelids down a little and see what colour do they have from inside,he said if they are dark pink or reddish pink it means her hb is normal,and i check them daily an they are dark pink.I hope her test tomorrow will bring good news.On coming saturday 5 weeks wil be competed since her last transfusion.

Sharmin,

Thanx for your wishes, Zainab is not taking any Hb F inducers,she is only on IP6 and folic acid along with multivitamins.Although i have wheat grass super shots but haven't tried it yet.

ZAINI.

Congratulations Zaini, i am so optimistic about the hb test and i am sure everything will go as you want. Who knows, may be it will last more and more

 

Manal

Zaini,
I am soo happy for you and sweet litltle Zainab. May be the IP6 is working well. After I joined this forum and learnt about IP6, I also started giving IP6 to my (now) 19 month old daughter. In the last one month, I also noticed she is looking fairer than before. In fact many of my friends commented that she is looking fair and I can see the pink in her cheeks. Also, I feel her energy level has improved.

Thanx Manal and Hope 

ZAINI.

Hi Zaini

I am very happy for Zainab. And I hope that her lab test also comes with the same number.

Lots of love and wishes for you and Zainab.

Dimple
 

Thanx Dimple,

I'll know the latest reading of her hb in few hours ,just praying for the best.

ZAINI.

We're praying with you Zaini - it will be good