Wish us luck !!

Andy,

I forgot to tell that I have "suffered" this return to the pump after one year's monotherapy with Ferriprox. Well, it didn't make a difference to me back then -2 years ago- and I used the pump regarding it to be a tool for better chelation. However, as my heart is clean, desferal becomes toxic (I have mentioned this in another thread) and makes me have heart palpitations(about 90-100 pulses which last for one hour after the end of the pump) which I do not experience when in oral chelators. This was one reason for me to start thinking of  dropping the pump - along  with the life quality improvement, of course, and now I find myself more decisive to drop the pump completely.

I agree that there is a psychological attachment to it, but not by the general thal population.
There is a slight depression to thals - that, I have noticed - when pump comes back into their lives.
But this is a great possibility, isn't it? Thals must keep in mind that their chelators count three(desferal-ferriprox-exjade). Not two. They must play with them and switch from one to the other, depending on each case. If they keep that in mind, they will be more ready to face any unhappy development.

I also agree about not abandoning the drug altogether with the first sign of side effect. Although I have noticed that thals who react to the drug from the beginning they will keep on reacting to it, second, third time, and they finally drop the case and switch to another chelator. I have seen this happening with Ferriprox, and now with exjade. Surely one must stick to it for a while remaking the chelation scheme but it rarely helps.

Lena.

Was just reading all that has been posted here...
Zaini...I dont know if I have even a fraction of experience or knowledge as has already been put here to be able to advise you...
I can only hope that whatever decision you make is medically correct and is apt for Lil Z!
I can understand how tough it will be to answer her questions...but you will find the answers within you or with great friends like Sharmin here!
I am amazed again at how much strength and wisdom you all parents have!
All the best.....
Madhavi

Thank you so much everyone,

Andy,

Of course she wants to give every chance to Asunra,and i know she'll understand if she had to go back,but it'll hurt me more then it'll hurt her,i remember when she was on desferal she often complained she couldn't sleep well.

Its been only 5 days she started split dose,but the immediate difference i have noticed is that her stomach ache is reduced by 50%,and thats a good sign i guess,i am praying her SGPT will be down and we'll be able to increase her dose.

Keep her in your prayers .

Zaini.

Dear Zaini,
Every thing will turn out to be fine Inshallah, and reduction in stomach ache of Little Z is the step one towards it.

Fouad

Off topic: Lena, your writings are always helping me. You are very close to my heart and you are so smart and like an eye opener for me. Thank you  
[It's not my best English, but I hope you understand what I meant to say]

I agree with Dore too  
 



Zaini
Prayiny for our little sweatie, keep updating my friend

manal

Dori,

I am touched by your opinion and  I am so happy if I  have helped you in any way. Your English is absolutely understood-not to worry.

Manal,

You are one of the most caring people I have met--not only to your family but to others,too.

Glad to have met you both.

Lena.

Lena,

Somedays I wish that we could program all thal children to have your strength and attitude - what a difference it would make to everyone.  I read your posts very carefully to learn how you think so that I can instill the same in my son.  I would love for him to talk to you someday, I would want him to hang on to every word. 

I look at all adult thals, who did not have the privileges that our little ones have, with such admiration.  You have paved the way back when all odds were against you.  The younger thals just have to follow in your footsteps with the odds stacked up in their favor.  These young people should be looking at you thinking, if they did it under their circumstances - we can certainly do it with all that we have. 

I really hope that you choose to write a book about your experiences someday Lena, the inspiration you would give everyone would be incredible. 

Sharmin

What can I say? I thank you all for your vote of confidence! Realy! When I started writing in this site I could never have expected something like this. I do not know about writing a book Sharmin, all I know is that I am willing to anwer whatever you want to ask me about or ever talk to you or your little ones,
any time.

Thanks  again - all of you!   

Lena.

I really hope that you choose to write a book about your experiences someday Lena, the inspiration you would give everyone would be incredible.

 

What a brilliant idea Sharmin, please Lena give it another thought..you would do great

Manal

i agree too...

Hi Guys,

Its been over a month i posted in this thread,as you all know that Z was having trouble with her elevated SGPT levels,and on Andy's advice i started giving her split dose of Asunra,that is 300 mg in morning and 300 mg in evening,her dose was already low because of her SGPT levels,in March when we gave blood sample for SGPT,somehow it got lost and we never got the result,last saturday Z went for transfusion and we gave sample for SGPT and guess whats the reading ?? 23 !!  its normal Alhumdulillah,so dose splitting does work  And we were able to resolve this problem just because of this wonderful forum  not a single doctor ever told me to split the dose to help her SGPT levels,all every doctor said was stop Asunra for a while or may be you'll have to go back to pump  .But thanks to this forum i am sure Z will do fine with Asunra InshAllah .

Andy,

I am thinking about increasing her dose now to 700 mg,but i'll give it to her on alternative days just to be on the safe side untill we get next reading of SGPT,What do you think ?

Zaini.

Hi Zaini
Alhumdulillah really happy for you and Z. By the way does your doc know you have been splitting Z`s dose, if not you should inform them so that many more children benifit from this. How`s her ferritin behaving? I too wanted to split Hassan`s dose just to see its effect on his ferritin but whatever 100mg boxes novartis had was reaching expiry in july. Did you get the 100mg boxes easily?In my hometown I had to request novartis for 100mg boxes and still waiting to get it till then I have enough boxes (400mg and 100mg) to last me till july.

maha

Wonderful news Zaini,  I hope many can benefit from this important tip. Moniter the frequency of ferritin decrease so you can know if the splitting the dose has bettter effect on ferritin or not

So happy for you my friend, i know how you were afraid that you might go back to desferal again , but thanks God
manal

Maha,

Thank you so much   her ferritin has stayed the same as her dose was maintainance dose rather then chelating dose,and we were unable to increase her dose because of elevated SGPT levels,her ferritin is 1185.But i am hoping once we increase her dose it will come down,Her doctor doesn't know yet that she is on split dose,i will tell her in my next visit,i was waiting to see what result we get from this.We never had any problem in getting 100 mg boxes,in fact i remember i told Novartis delivery person that we need 100 mg boxes because we wanna split the dose because of elevated SGPT levels and he never objected.  

Kisses for Hassan  

Manal,

Thanks a lot dear friend,i am Thankful that it worked,ferritin as of now is same because of low dose,but once we increase her dose i am sure we'll see a drop InshAllah .


Zaini.