Wish us luck !!

The new year is bringing good news Zaini, so happy for you

manal

Thanks Manal

Zaini.

AOA Zaini Sis ,
Best of luck to u n lil-Z ....

Best  regards
Take cAre
Umair

Zaini,

I am very glad to hear that!  I hope that her SGPT will remain low and her ferritin will also begin to drop.  Remember, her actual iron stores are definitely decreasing, whether you can see it reflected in SF or not.  That is something we have noticed with Lil A with all of his tests. 

Best best wishes in the New Year to you and to lil Z,

Love,

Sharmin

Thank you so much Sharmin,

I hope you guys are enjoying holidays 

Zaini.

Hi Everyone,

A little update on Z's ferritin level.last time checked in October it was 1261 and now its 1133,its dropping painfully slow and its been a year she started Asunra,her SGPT is a bit high then normal range,i am hoping that splitting of dose might giver her round the clock chelation and will bring her ferritin down faster.

Zaini.

What did you say about ferriprox, Zaini? Why couldn't Z take it?

Lena.

Hope it will be better Zaini by next time, be patient my friend

manal

Zaini,

I think that lil Z is on a maintenance dose and that is why he ferritin is remaining constant.  I am still glad that it has not risen, I also believe that the exjade is removing iron from her organs and tissue. I wish that she could be on a higher dose for a little while - but her SGPT values have been a little bit of a concern.  I also wish that you docs would allow combination for a while. 

What Lena is doing - exjade/L1 combination will be a great thing once more widely acceptable. 

Sending best wishes,

Sharmin

Hi Zaini,
Good to hear about low SGPT for Little Z. Ferritin of 1133 is still pretty good for a growing kid. You are doing  great job controlling Little Z's ferritin.

Zaini,

I am thinking that splitting her dose will have two benefits, it will lower her ferritin and decrease her SGPT value because she is getting smaller doses. 

Best of luck,

Sharmin

If I can add my two cents. Splitting the dose can be beneficial in little Z's case. The ferritin level is pretty good for little Miss Z, its not bad at all. Do not be alarmed unnecessariy. I think at this point, all of us are in trial and error situation to achieve our goals.

As discussed in another thread, little miss A is going to split the exjade as well and we are hoping that would resolve her nausea problem.

Stick together 

This is how it has worked with every chelator. It is the patients and parents who discover the best chelation techniques. Novartis planted the idea of once daily dosing in patients by asking them if they would like a once daily chelator. Of course everyone will say yes, but the reality in actual use, is that reducing the side effects and making the drug more tolerable overall by splitting the dose is becoming more important than once daily chelation. With the speed of the internet at work, new ideas in managing chelation spread rapidly, just as we've seen by our advising patients to start on low doses of Exjade and Ferriprox when first starting the drug. Most doctors now know to recommend this and this has been accomplished largely through parents and patients bringing this to the attention of the doctors. I think we will quickly see this same phenomenon with this bit of advice about Exjade.

You are right Andy, Oakland is advocating splitting of the dose now.  They have advised us to do so with lil A's exjade.

Sharmin

Thanks so much for your input everyone

Bostonian,thanks for your kind words,sometimes we really do need them  its good to hear that you guys think that Z's ferritin is not alarming,and yes we will be splitting the dose from tomorrow if i get the medicine today,Novartis said they are short of 100 mg boxes,and today i have her last dose,hopefully i'll get it by tomorrow.

I am also seriously considering combination with desferal,but the thing is,the doctor who is allowing his patients to do that,i am not sure if he'll let us do that because of Z's ferritin levels,coz they usually see kids with thousands of ferritin level,but still as Z gets a break from school i am planning on visiting him,as i don't wanna do it without doctor's supervision.

Can anyone plz give me a link to kid's growth chart,for south asian kids? I can't seem to find it and the ones i found i couldn't understand.Z is 127 cms tall and weighs 27 kg.

Thanks

Zaini.