Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Zaini:
Thanks very much for your input Andy and Sharmin,
We visited her hemo today,and it was after 5 months,and for once she accepted that our daughter is doing great Alhumdulillah,and she gave me the credit for it,it was a nice change of tone,i told her about carao,she wasn't much interested but she didn't throw any sarcasm either,i told her that all my knowledge comes from THIS forum and she wrote down the site's address.She asked me to meet a couple whose daughter was diagnosed with thal 6 months back,and told me that i should ask more moms at hospital to join the forum,i told her that i have done so but unfortunately no one has joined till yet.When i told her that some of our members went to Singapore conference she was really impressed.
She said no to increaseing ferriprox dosage,saying that your daughter is doing fine with the current dose so stick to it,now what should i do,previously we were doing desferal 3 nights per week,but now i have started 4 nights,to which she didn't object..
Zaini.
Sharmin:
Zaini,
I am glad that you had a productive conversation with Zainab's hematologist. I hope to see more people from your hospital join our site, it will make a big difference in their lives.
You should be very proud of yourself for taking care of your little girl the way you have, may god give you the courage and strength to continue doing what you do. May our little angel continue to grow and thrive:) I am very proud of you:):)
I agree with you, desferal has fewer side effects and is the 'safest' chelating drug, therefore if you are going to increase a drug for chelation it is better to increase the desferal rather than the L1 - because Zainab is tolerating the dose she is currently at so we should not mess around with that. Little A is on daily exjade and desferal 5X a week, 12 hours a day. This is the dose that the docs in Oakland put him on. Once his ferritin is below 1000 he will be on 3X a week desferal, and once his ferritin reaches 600 he will be on exjade alone.
We have a SQUID booked for February, let's hope for the best. The antibody screen on his last blood test came back as NEGATIVE last time, so let's hope that it stays that way and his transfusion requirement remains low....
I think that it would benefit your daughter to have her ferritin levels below 1000 before she enters adolescence - the years in which children grow and develop. That is why I am being very aggressive with my son's chelation right now because I want him to grow and develop normally - and I don't want iron to be deposited in (most importantly his heart, liver, pancreas) his hormone producing glands during these years. I think that this should be a priority in all kids in this age group - to get the iron levels as low as safely possible. We are lucky that our kids are on combination therapy - 4 or 5 days of desferal is quite low and they can (god willing) escape most of the side effects of the drug - while maintaining good hg levels.
Sharmin
Zaini:
Thanks a lot Sharmin,I couldn't have done it with out you and with out this forum :hugfriend,I am trying hard to get her ferritin down,to keep it below 1000 all the time,right now there is a bit availability issue with desferal,just pray that we get desferal as soon as possible,i keep bugging my hubby,but he can't do much if it's not available in the market.
When did you last check Little A's ferritin? best of luck with the SQUID. :hugfriend
Zaini.
Sharmin:
Zaini,
How long has this issue been going on, the difficulty in obtaining desferal? Do you have any desferal at all?
I also don't know if I agree with the doc that ferritin needs to be below 1000 before beginning exjade. I commented in the following thread:
http://www.thalassemiapatientsandfriends.com/index.php?topic=2271.msg20389#new
Please keep us posted on the desferal issue. Desferal is the safest and best understood chelator, I hope it continues to be available.
Sharmin
Manal:
There should be something done to solve this problem Zaini, i assume many are suffering from the same situation. Some people would not tolerate Asunra/exjade for a reason or another and desferal should be available . Is there a any governamental place where you can send a petition oranything telling them that even if Asunra is cheap, some people for medical reasons will not stopusing desferal.
There should be something done her. We can not repeat again what happened with Sajid :mad :mad :mad
manal
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