The Goal For Thalassemia Patients Today...

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Offline Bostonian_04

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Re: The Goal For Thalassemia Patients Today...
« Reply #30 on: February 13, 2013, 10:47:12 PM »
Sharmin,
it is soo good to hear about little A and his achievements. He is such an inspiration for all the parents like me.
Quis custodiet ipsos custodes ? - Plato

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Offline MikeD

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Re: The Goal For Thalassemia Patients Today...
« Reply #31 on: February 20, 2013, 03:11:26 AM »
Thanks so much for sharing Sharmin!!  Your little one's achievements are incredible. Makes a parent like myself feel so much better! 

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Offline Sharmin

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Re: The Goal For Thalassemia Patients Today...
« Reply #32 on: February 25, 2013, 06:05:29 AM »
Bostonian,
Thank you so much - I hope your princess is doing great - these children are all so inspiring.

Mike, you have every reason to be optimistic :) 

BTW Lil has started snow boarding and the instructor was very happy with his progress in the first few lessons.   There is nothing that your child should be held back from.

Best,

Sharmin 
Sharmin

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Offline marziya

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Re: The Goal For Thalassemia Patients Today...
« Reply #33 on: August 12, 2013, 11:06:50 AM »
hey Sharmin

thats a very good info....but as antioxidents what do u gv him....???
Be postive always!!!

Re: The Goal For Thalassemia Patients Today...
« Reply #34 on: October 11, 2013, 01:46:24 PM »
hey sharmin,

would u plz elaborate on the split dose-am pm. does that mean dividing the total prescribed intake of medicine into two times a day??
as for me, currently i have been taking 1800 mg of exjade as per my bodyweight which is 52 kgs. and my ferritin level has quite recently dropped to 600.. wat would be the ideal thing to do?? should i consider reducing the dose or after it drops to 200-300??

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Offline Dharmesh

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Re: The Goal For Thalassemia Patients Today...
« Reply #35 on: October 12, 2013, 10:15:52 AM »
hey sharmin,

would u plz elaborate on the split dose-am pm. does that mean dividing the total prescribed intake of medicine into two times a day??
as for me, currently i have been taking 1800 mg of exjade as per my bodyweight which is 52 kgs. and my ferritin level has quite recently dropped to 600.. wat would be the ideal thing to do?? should i consider reducing the dose or after it drops to 200-300??
Hello Kanika,
Split dosage can be taken with a gape of 12 hours e.g. 8AM-8PM. It means half dosage in the morning and half dosage in the evening.

Your ferritin level is good.

Have u had ur T2*MRI? It shows true picture of Iron stored in the body and help in setting correct dosage.
Start listening your body, it always gives signs

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Offline aus

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Re: The Goal For Thalassemia Patients Today...
« Reply #36 on: August 07, 2014, 04:07:19 AM »
I just have a question regarding how low the Hb should be before transfusion. Over here in Perth, Australia, they would now transfuse my son if he is 10. He's pre transfusion Hb count is usually between 7.8-8.8. I feel that he really suffers when his Hb count drops to 8.0. He gets his transfusion every four weeks, on 375mg exjade and ferritin level is around 1300. My son plays badminton seriously. He can only join tournaments based on his transfusion date. The latest he could play properly (although I feel there is already danger in it) in a tournament was at 3rd week of transfusion. He did come 2nd on local junior tournament for singles, and first for doubles. In singles he loss to his doubles partner. His friend knew he was already low on blood and couldn't push it any further. Even his coach asked if we could bring the transfusion date forward, but we all know there is no such chance. I wasn't at the tournament, but my husband said that he thought my son had stopped breathing momentarily during the finals of the singles match. Is it advisable to let him continue with the sport?

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #37 on: August 07, 2014, 04:23:05 AM »
Pre-transfusion Hb should be 9.5-10. If he is kept above that level, he shouldn't have problems with the sport.
Andy

All we are saying is give thals a chance.

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Offline Katerina_Mall

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Re: The Goal For Thalassemia Patients Today...
« Reply #38 on: March 24, 2015, 12:35:10 PM »
i would like to ask what is IP6? i m from Greece and i have not heard of this, can we take this (thal major)? and if yes is there a link where i can buy it from online? what exactly does it do?

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Offline Bostonian_04

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Re: The Goal For Thalassemia Patients Today...
« Reply #39 on: March 24, 2015, 08:24:36 PM »
Hello Aus,

Can't your son have transfusion every 3 weeks to maintain a Hb of 9.5 and above? Here is US, many hospitals prefer every 3rd week transfusion to make sure Hgb remains above 9.5.
Quis custodiet ipsos custodes ? - Plato

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Offline Andy Battaglia

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Re: The Goal For Thalassemia Patients Today...
« Reply #40 on: March 25, 2015, 02:22:17 PM »
Hi Katerina,

IP6, Inositol hexaphosphate is from the B vitamin family. It is a mild iron chelator, it helps to protect against damage from iron and it is a powerful antioxidant. It can be purchased in capsule form from vitamin companies. I recommend it as a supplement to chelation drugs.
Andy

All we are saying is give thals a chance.

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Offline Katerina_Mall

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Re: The Goal For Thalassemia Patients Today...
« Reply #41 on: March 25, 2015, 02:24:15 PM »
thank you Andy :)   i will try and find where i can purchase them from here in Greece

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Offline Lokkhi maa

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Re: The Goal For Thalassemia Patients Today...
« Reply #42 on: August 11, 2015, 09:53:14 AM »

Thanks Sharmin for your nice post.All are manageable but how to manage if transfusion need after every 4 weeks to maintain hb 9.5 to 10?How my baby will suffer it?Its really very hard to accept.

How the hb will raise in future ?All of us need the solution...
Lokkhi Maa

Re: The Goal For Thalassemia Patients Today...
« Reply #43 on: August 12, 2015, 03:20:10 PM »
IP6 is an iron chelator and was the original reason I brought it to the attention of this group. It is also a powerful antioxidant that inhibits the actions of iron if the cells, preventing the oxidative damage that iron causes. Even in low iron thals, oxidation from hemolysis and unmatched alpha chains cause much damage, so antioxidants remain key even when the iron status is low. With the success of little A in keeping his pituitary normal, I feel we must re-emphasize the importance of high consumption of antioxidants like IP6 and vitamin E.

Is there any local importer in Bangladesh, Dhaka for this? Since its herbal i would love to try it out.

Re: The Goal For Thalassemia Patients Today...
« Reply #44 on: October 25, 2016, 08:28:43 PM »


Hi Andy

Why don't doctors tell us these things or recommend anti-oxidants to thal patients as a gold standard???!!

I am interested in doing some anti-oxidant so which is the one to go for - IP6, Vit E, Vit C? Which one has the greatest benefit?

What is your take on the benefits of Vit B complex for thal patients?

Thanks
Khwahish

 

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