Discussion Forums > Working Towards a Cure
Carao: Has Anyone Ever Tried This Product?
Lloyd Standish:
Of course I am not a doctor, but my personal opinion is that the acceptable subnormal HGB will vary among individuals. If the person is symptomless, with normal energy level, that in my opinion matters a lot.
I think carao fruit therapy may allow some thalassemics to become symptomless and to maintain stable blood counts without blood transfusions, but at lower than normal HGB levels (perhaps between 9 and 11). I am hoping that it will help some with thalassemia minor to attain normal blood counts as well.
Sharmin:
Zaini,
You are right, it is important to keep hg levels above 9 - that is why the guideline is to transfuse between 9 - 10. In the past, before the antibody issue, whenever my son would have a hg of 10 or above our doctor would suggest that we wait a week to transfuse. 9.4ish is the perfect pretranfusion hg.
It is a fine balance between hg levels, iron levels and chelation. A hg of 9 is important for the bones, growth and the spleen. If you can get away with fewer transfusions you have less iron and in turn lower requirement of chelating agents which means fewer side effects from chelation. If you can maintain a hg level of above 9 (with Carao) for a longer duration then you will have achieved all of these goals.
I think Zainab will do well in this trial - just keep her hg above 9. I hope to begin using Carao in the future - I just don't want to add anything new since we have just completed his treatment this summer. So far he looks good - he's holding his hg and things are returning to normal. No more puffy cheeks:)
Best of luck to everyone in this trial,
Sharmin
Andy Battaglia:
The thinking with thalassemia intermedia has been changing in recent years, and it is becoming more accepted to keep the Hb high (above 9-10) so that normal growth and development occurs. In the past, intermedias were not transfused until they dropped to the 7-8 range. With advancements in chelation and blood safety, the dangers from transfusion are greatly reduced, so if it is shown that low Hb is inhibiting development, transfusions are now being recommended whereas in the past, the trade off of slower development over taking blood was the norm. Chelation compliance is the key if this strategy is to work. Supplementing chelation with iron removing antioxidants (IP6, green tea extract, and fermented papaya product which we will be learning much about in the near future) and boosting Hb with Hb inducers (wheatgrass, resveratrol, carao etc) should also be part of the treatment strategy.
AL:
Llyod,
I still have not received it too. Sure hope that i can receive it soon coz need to join the rest in giving info whether it's working with my son.
Zaini:
Hi Everyone,
I recieved other two bottles of carao yesterday,Thanks a lot Lloyd.
Yes,my goal is to keep my daughter's hb between 9 and 10,i don't want her growth or physical appearence to be effected in anyway,right now if a person who doesn't know about her thal,when looks at her can't detect a thing,i want to keep it that way.I am trying my best to be compliant with the chelation,her ferritin last checked was 1232,it's still a bit high,i am working to bring it down ,below 1000 will be good.
Best of luck to everyone.
Zaini.
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