Am New to this forum!!!!

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Offline mrzahed

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Am New to this forum!!!!
« on: July 07, 2008, 03:53:12 PM »
Hi All,

I would like to introude myself, am Zahed father of Anas (11 Months) who was diagonised as thal major in March '08 here in Jeddah - Saudi Arabia. Since March he is getting B/T every month as well as Exjade on daily basis as recommended by the Dotor. I have heard that BMT is the only solution of Thal Major. Is it true? Or is there any ayurvedic or homeopathy medicine? Please advice...
« Last Edit: July 07, 2008, 04:06:33 PM by mrzahed »

Re: Am New to this forum!!!!
« Reply #1 on: July 07, 2008, 04:15:56 PM »
hi,zahed, i was also a thal major since i was 9 months and i also took transfiution and the only way to be a normal person is to do bmt.last year october 17th i did bmt and now i am living a normal life and it is now more than 5 months that i do not transfer blood after the bmt.i did bmt from india's vellore city cmc hospital .it cost a lot but its worth.

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Offline mrzahed

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Re: Am New to this forum!!!!
« Reply #2 on: July 07, 2008, 04:36:35 PM »
How much did it cost, i have already consult one doctor he said after 3 years of age Anas can be operated.

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Offline Andy Battaglia

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Re: Am New to this forum!!!!
« Reply #3 on: July 07, 2008, 05:48:00 PM »
Hi Zahed,

BMT is quite a costly procedure with costs ranging from $100,000-$150,000 US and can go beyond that. There is also some risk as it is not successful in all patients and some even die. The clinic in Pesaro, Italy has the best success rates.

BMT is currently the only cure. However, treatment has advanced greatly in recent years and the outlook for patients today is very good.

I am surprised to hear such a young child is chelating. This is new as the earliest Exjade was approved for was age 2. Has he had any reactions to Exjade? I am extremely interested to know how well he tolerates it, as many parents wish to start their children on Exjade rather than desferal.
Andy

All we are saying is give thals a chance.

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Offline mrzahed

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Re: Am New to this forum!!!!
« Reply #4 on: July 07, 2008, 06:46:34 PM »
Dear Andy,

Thanks for the info, well as per our doctor's recommendation we are giving a dosage on Exjade 250mg firstly we dissolve the tablet in water and then add some honey to it. with the help of syringe we inject in his mouth at one go. Alhamdulillah there is no reaction (side efects) on giving this tablet.

I would appreciate asilagreen if she can provide the cost in INR.

Re: Am New to this forum!!!!
« Reply #5 on: July 07, 2008, 07:47:58 PM »
Mr Zahed,

Please be aware that exjade is not recommended for children under six in Canada, however, in the US, exjade is administered to children as young as 2 years old.

I am not sure about the practice in Saudi Arabia, but your child has just started the transfusion and it usually is not until 12 transfusions before chelation begins, the recommended 12 transfusions are considered because the ferritin levels are high enough at that time to administer exjade safely. One thing you might want to check is the ferritin level of your child.

With respect to BMT (Bone Marrow Transplant) you need to know that BMT require compatible donor of marrow, if your child has any siblings than he or she can be checked if they are compatible donor. Outside the family it is very rare to find a match.

BMT is not your regular operation, you need HLA matched donor and the risk is high. Step 1 for you to check you, your spouse and your other children (if any) against the HLA typing of your thal major child.

Keep asking questions
Regards.

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Offline maha

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Re: Am New to this forum!!!!
« Reply #6 on: July 08, 2008, 11:53:03 AM »
Hi Zahed
I am surprised exjade was started so early. My son is 2.2years old and I wanted to start him on exjade as soon as he turned 2, but the doc said it was dangerous to start chelation before the ferritin reached 1000mg in children.
One of our members fahad is in jeddah. He says the standard of care in the center he takes his children to is very good. Do contact him.
BMT in CMC Vellore costs around 10-20 lakhs INR.

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Offline Andy Battaglia

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Re: Am New to this forum!!!!
« Reply #7 on: July 09, 2008, 04:26:38 PM »
I have had a message passed onto me from the father of a 15 year old Maldivian boy who died after BMT in Vellore. The cost was around $30-35,000 US. There is a definite trade off. The cost is much lower than Italy but so is the success rate.
Andy

All we are saying is give thals a chance.

 

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