HLA Mapped what further steps I have to took

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Offline maha

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Re: HLA Mapped what further steps I have to took
« Reply #15 on: December 16, 2007, 04:48:50 AM »
Hi Andy
Could you tell us how old they were. The doc in CMC vellore told us rejection nowadays didn`t result in death always. There are exceptions I suppose, as Abdul Wahab did recover from a rejection. :dunno
Regards
MAHA

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Offline Andy Battaglia

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Re: HLA Mapped what further steps I have to took
« Reply #16 on: December 16, 2007, 06:50:52 AM »
Both kids were around 17 years old. I do not know who the doctors were. If I can find out I will post the information.

Abdulwahab's doctor, Dr Lucarelli told me that Abdulwahab was fortunate, as patients often don't survive severe host vs graft disease. The severity of the HVGD cannot be predicted in advance and varies greatly. A small percentage of bone marrow transplants result in severe HVGD and this happens at every clinic. Younger patients do have a better survival rate than older ones.

I don't want to discourage parents from considering a bone marrow transplant, but I do want them to be totally aware of the risks, and be prepared for any eventuality. Deciding on a bone marrow transplant will never be an easy decision and parents should understand everything that is involved, including aftercare and quality of life, and whatever risks are involved, in choosing either path.
Andy

All we are saying is give thals a chance.

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Offline §ãJ¡Ð ساجد

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Re: HLA Mapped what further steps I have to took
« Reply #17 on: December 16, 2007, 07:13:31 AM »
Oh my!

I'm so sorry to hear about Ahmed and Zeeshan :(

May their family find the strength to bear this loss and may Ahmed's and Zeeshan's soul rest in peace and Almighty God give them a place in heaven.

:sorrow
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Offline vic

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Re: HLA Mapped what further steps I have to took
« Reply #18 on: December 16, 2007, 11:08:10 AM »
i agree with you andy,
the smallest risk (which we were told is 1 in 10) of death is way too high a risk for us.
i take my hat to people who choose this path as i dont have the strength to put christian through it or my family. 
vic

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Offline Ambika

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Re: HLA Mapped what further steps I have to took
« Reply #19 on: December 17, 2007, 08:28:15 AM »
 I'm so sorry to hear about Ahmed and Zeeshan

I am can feel the pain through which there parents are going .May there soul rest in peace
I agree with Andy and all of you.

But I want to Mention onething that all of you will agree that without going for BMT we thal are still risking our lives with every transfusions.  As we trust all blood banks etc who give us tested blood still sometime we get infected blood and as a result due to mistake of other we loose our right to live and see life that is very beautiful. With BMT this risk reduced I know I have to take lot of care of my child but i want to give her life that she can live without any worry that her ferritin is now going up and now she had to go for transfusion beacuse for every parent this is painful when you have one normal child and another thal major because these two girls are my two eyes and if any of one of them is in pain I can feel that pain.

regards
Rupali

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Offline Ambika

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Re: HLA Mapped what further steps I have to took
« Reply #20 on: December 18, 2007, 03:44:32 AM »
Quote
Dear Rupali
We prefer to do the transplant when the child is two years old
Please could you send us the HLA reports and the medical report on which the diagnosis was made by post with all your contact details. We will then fix a transplant date ? August 2009
the patient and donor can come for the preliminary evaluation in Jan 2009
Meanwhile please continue regular transfusion and initiate chelation after the 10th transfusion
regards
dr mammen chandy


Dear all

Reply of Dr mammen chandy has come they are saying to wait till aug2009  and he is also saying to initiate chelation after 10 transfusions but the aim people are saying to go for chelation after 20 transfusions. please can anyone throw a light on this.

regards
Rupali

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Offline §ãJ¡Ð ساجد

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Re: HLA Mapped what further steps I have to took
« Reply #21 on: December 18, 2007, 07:12:54 AM »
Hi Rupali,

It's not the number of transfusion that matters; it's the amount of blood that has been transfused and the increase in Serum Feritin that has resulted from them that counts. Usually chelation starts when Serum Feritin is above 1000 which normally happens after 10-20 transfusions depending on the amount of blood given w.r.t child's weight and Hb levels.
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Offline priya

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Re: HLA Mapped what further steps I have to took
« Reply #22 on: December 18, 2007, 06:04:40 PM »
Hi Ruapli

I think Dr. Chandy has advise you  chelation after 10th transfusion is becuase the less iron deposit in the organ is good for the patient going for BMT.

 :goodluck

Dimple

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Offline priya

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Re: HLA Mapped what further steps I have to took
« Reply #23 on: February 08, 2008, 05:16:25 PM »
Hi Ruapli

Can you pls. tell me what is the cost of BMT in CMC-Vellor.

Love to your daughter.

Regards

Dimple
 

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Offline Zaini

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Re: HLA Mapped what further steps I have to took
« Reply #24 on: February 09, 2008, 05:49:18 AM »
Hi Dimple,

I am not sure about the current costs ,but back in 2004 when Zainab was diagnosed,and i was searching for options,i met a lady whose son went through BMT at CMC-Vellore,and she told me that their expenses were about 15 to 16 lacs ,in Pakistani currency,later i heard that this is nearly the same cost here in Pakistan.

ZAINI.
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Offline Hope

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Re: HLA Mapped what further steps I have to took
« Reply #25 on: February 09, 2008, 09:57:31 PM »
Hi Rupali,

I am a new mom joined this group recently. My 18month old daughter was diagnosed as Thal major when she was 11 days old. We were also looking for BMT option when we first heard about this condition. At the time, we met Thal specialist in Boston Children's hospital Dr. Neufeld and transplant specialist Deb Chirnomas (spelling ?). Both of them told us that the best time to do BMT is between 5 and 8 yeards old. It seems till 5 yrs of age, the brain develops and chemo therapy is not good for brain and cognitive development. So, BMT should be avoided till 5 yrs, if the condition is not life treatening.  So, please think carefully when you decide on BMT for your daughter, as Thal is not life threatening and can be managed well with regular transfusion and chelation.
On Chelation, again my daughter's hemo says, for children, the chelation should be started when the ferritin level reaches between 1500 and 2000 and the child is above 2 yrs of age. If the ferritin is below 1000, the chelation medicine can chelate other useful elements like Zn, Cu etc which can affect growth and development. So, please talk to your hemo who is specialist in Thal to start any chelation for your daughter. Dr. Cheddy may be a great transplant specialist but he may not fully know about chelation to suggets the best approach for managing Thal.

Whatever you decide, I will pray for you for positive outcome.

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Offline Narendra

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Re: HLA Mapped what further steps I have to took
« Reply #26 on: December 11, 2009, 04:38:40 AM »
Bringing up an old post, but this is related to the original poster.

I just talked with the father of Ambika (2 and half years). She has gone through the transplant on 5th December at CMC Vellore (India).

This is another angel who is looking for prayers from all of us for a successful outcome.

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Offline Keep Smiling

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Re: HLA Mapped what further steps I have to took
« Reply #27 on: December 11, 2009, 04:54:13 AM »
May the transplant be successful in all respects and this another angel live a very healthy life..........
Ameen

Abbas

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Offline Zaini

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Re: HLA Mapped what further steps I have to took
« Reply #28 on: December 11, 2009, 05:52:31 AM »
Narendra,

Please convery our prayers and well wishes to Ambika and our family,all our prayers are with her :pray .

Zaini.
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Offline Manal

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Re: HLA Mapped what further steps I have to took
« Reply #29 on: December 11, 2009, 01:15:58 PM »
Narendra, please try to update us if possible.

Wishing the little angel all the success. They are in my prayers


manal

 

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