Wish us luck !!

@ Zaini Sis ,
Glad to hear that everything is fine again and she is back to school again ... wishing her all  the best of luck , health and life .. may God bless her with everything she need ( Ameen ) ...

Best Regards
Take Care
Umair

Thanks Umair .

Zaini.

I hope lil Z is all better now and that her tx went really well:)

Sharmin

Thanks Sharmin

She is much better now,her pre transfusion hb this time was 9.1 ,which i am assuming was because of fever and we have taken next appointment for 3 weeks,but the thing thats worrying me is her SGPT,last month it was 40 or 44,and this month again it came back 80 ,Could fever effect SGPT readings ? I hope it will be down by her next transfusion.

Zaini.

May God bless her...............

Little Z's SGPT has risen again its 145 now,i don't know what to do since she is already on a low dose,that is 22mg/kg,and her ferritin was checked in October and it was 1261,its decreasing painfully slowly,i haven't checked it with her doctor yet,as it sunday today,i'll call her tomorrow. .

Zaini.

Zaini,

 why is she not on ferriprox alone? I am not talking about ferriprox-exjade because your doctor does not suggest it as I remember. And I am not sure 22mg/kg you mention is so low a dosage. The lowest one which I am going to start with, is 10 mg/kg. My doctor told me that in such low dosage no side effects arise. Of course, I have a low ferritin level so this low dosage can be justified.I do not think this is recommended for higher counts.
I really do not know what to recommend for Zainab. I surely do not like the ups and dows of her SGPT. I also do not like the continuous breaks, now and then, of her chelation due to exjade side effects. What about ferriprox? Why don't you ask your doctor about that?
I'll ask mine for Zainab too, next time I go to the hospital.

Lena.

Lena,

Thanks for your reply Z was on ferriprox alone once,and those were the days she reached her highest ever ferritin,2400,so i never thought of going back on that,either we'll have to wait for exjade to get adjusted with her system or either its combination therapy of ferriprox and desferal,since her doctor is not ready to let her use desferal with exjade,last time when her ferritin showed a little decline,i was hopeful that exjade has adjusted by now,but this rise in SGPT has worried me a little again.

Zaini.

Zaini,


the best therapy ever is combination therapy, especially the one that includes ferriprox as it is the only  cardio-protective chelator. Please keep us informed after consulting your doctor.

Lena.

Dear Zaini

many of the children here in Fatimid Foundation started Asunra. their record was maintained and the doze was adminstered. even the doctor and my mama asked me to switch to Asunra, but i was afraid that starting Asunra may affect my university and studies if it were not suiting me. so i decided to stay on Ferriprox and Desferal. my ferritin last month was 1900.My fault, as i don;t comply with the advise due to the tough schedule and projects at university.
Now, recently my doctor told me that many of the children have switched back to Ferriprox as the Asunra didn;t suit them and also their ferritin wasn't under control.
the doctor here in Fatimid says that the "Golden therepy" is combination of Desferal and Ferriprox.
Desferal is hard to administer due to the needle prick, and i'm sure little Zainab won't like it, but if the SGPT levels are not going to get stable, you should consult with your doctor and switch back to Desferal or Ferriprox. (This is only my suggestion, the doctor can guide you well).

Best wishes for cutie Zainab


Fouad

I wonder why the kids have trouble with Asunra. I hope the doctors are starting them on low doses until their bodies get used to the drug.

Zaini, i wish you can find the best and comfortable option for little Z, good luck my friend

manal

Zaini,

I wish that lil z's sgpt would not rise.  I also hope that ferriprox/exjade combination will be approved for more people soon.

Sharmin

Thanks everyone

Lena,

I forgot to tell you that Z did start Asunra with low dose,she started it with 15 mg/kg,and in January her first year on Asunra will be complete,as for combination thearpy,i know its the best,but as we all know that desferal can hinder bone growth,and Z isn't very tall already,infact she has gained only 4 cms in her height in last year,she is 124 cms.I am not expecting her to be tall as i am only 5'2 and my husband is 5'6 or 5'7,but i'd like her to grow normally.

Fouad,

Thanks for your concern,I am just hoping that Asunra will work for her,coz she'd hate going back on desferal,and since her ferritin is not that out of control and is showing decline so i am hopeful that she won't have to switch back to desferal.

Andy,

Do you think i should give Z a break from Asunra for  few days? She is already taking Nigella,anything else  you think would help?

Sharmin and Manal thanks for your wishes  .

Zaini.

Lil Z i have a lot of prayers for u, Insha Allah everything will be fine soon!

Abbas