Discussion Forums > General Chatter
One Year follow up
Sharmin:
We are leaving for our trip tomorrow. Our treatment in Oakland began one year ago. This is also when we started the combination therapy. I believe that it has been very good for him and during this one year we did not experience any adverse effects, other than occasional nausea. I hope that others will soon be able to use combination therapy such as this in the near future. Personally, I think that exjade/L1 combination would be great.
Lil A's ferritin levels have been below 1000 recently, we will see what the SQUID test reveals. If his levels are low enough perhaps we can stop using desferal! He would be thrilled about that!
I will post updates from our visit and anything new that I learn as soon a possible.
much love to all of you and thank you all for your support throughout this time. Andy, I cannot thank you enough for encouraging us to go to Oakland.
Sharmin
Zaini:
Sharmin,
Have a safe trip :hugfriend i am sure every report will be fine ,much love to Lil A.
Zaini.
Sharmin:
Thank you for your support Zaini :hugfriend
I will be thinking of you and lil Z when I am there.
Have you heard anything about having ferriscan or T2* there for lil Z?
Sharmin
Manal:
Good luck Sharmin, i am sure that the doctors will be amazed with his reports :thumbsup
manal
Andy Battaglia:
Sharmin and Everyone,
The recent tragic passing of young Thoa is a harsh reminder that patients need to be treated by doctors who fully understand how to treat thalassemia. I am so glad that little A is able to be seen at Oakland and I want to encourage everyone to talk to their doctors about the comprehensive approach to treating thal. With a well planned treatment program and annual assessments, the lives of thals can be greatly improved and even saved. This close supervision usually has the benefit of improving patient compliance with the program. Competent treatment should be a basic right for all thals.
The Standards of care guidelines can be found in the Documents section at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1762.msg14639#msg14639
Sharmin, have a good trip. I think little A is doing well and this will be shown by his annual assessment.
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