HLA Mapped what further steps I have to took

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Offline Ambika

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HLA Mapped what further steps I have to took
« on: December 10, 2007, 11:02:48 AM »
hi there
 good news my daughters HLA Mapped
Ambika (9 months old) HLa has been mapped with her sister on last saturday the hospital(AIIMS ) People told me. . Now they are doing another test and after that they will give us the reports . please can any one giude what I have to do further again ambika hb fall s to 8.5.

regards
rupali

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Offline Zaini

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Re: HLA Mapped what further steps I have to took
« Reply #1 on: December 10, 2007, 01:24:40 PM »
Congrats Rupali  :goodluck Though i think you'll have to wait till your daughter is two years old.

ZAINI.
^*^Xaini^*^

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Offline priya

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Re: HLA Mapped what further steps I have to took
« Reply #2 on: December 10, 2007, 08:53:13 PM »
CONGRATS RUPALI,
I AM VERY HAPPY THAT YOUR DAUGHTER HLA MAPPED WITH HER ELDER SISTER.
AS ZAINI SAID YOU HAVE TO WAIT TILL YOUR DAUGHTER IS 2 YRS OLD. 
:cheer :veil :stars

:goodluck


DIMPLE

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Offline Narendra

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Re: HLA Mapped what further steps I have to took
« Reply #3 on: December 10, 2007, 09:32:04 PM »
good news my daughters HLA Mapped
Ambika (9 months old) HLa has been mapped with her sister on last saturday the hospital(AIIMS ) People told me. . Now they are doing another test and after that they will give us the reports . please can any one giude what I have to do further again ambika hb fall s to 8.5.
regards
rupali

Did you get all the tests done? They do HLA A, B and DR test. If all these match for the donor and receipient, then there is a full match, If that is true, that is really a good news.

Try to find out as much information for the BMT. Also, you might want to find out where you want to get the BMT done. Ask the hospitals what is the success rate and which doctor is doing it, as the results vary with the staff.

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Offline Manal

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Re: HLA Mapped what further steps I have to took
« Reply #4 on: December 11, 2007, 01:16:39 AM »
Congratulation, i am really soooooohappy fo you.  As i said before, i know a little girl who has done a BMT when she was 11 months and now she is 3.5 years

Manal


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Offline §ãJ¡Ð ساجد

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Re: HLA Mapped what further steps I have to took
« Reply #5 on: December 11, 2007, 08:00:27 AM »
Great news Rupali!

I wish you all the best for deciding to go for BMT or not. Keep in mind the best possible place with the best success rate that you can go for. Also ask your doctors about peripheral Stem Cells instead of BMT. I hope it will be less invasive for your little donor.

:goodluck
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Offline Ambika

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Re: HLA Mapped what further steps I have to took
« Reply #6 on: December 12, 2007, 04:15:44 AM »
Dear all

Thank you very much for your good wishes  :smiley

I am   trying my best that I will go for BMT from a place having good success rate .I want to mention that till now we are making our mind to go for CMC(Vellore). If any one can help me in this regard or know any other option please tell me and forward me the details  I will be obilized .

Manal  can you please forward me the details of the child whose BMT  is done when she was 11 months you can call me +91-9811971982.

Sajid please tell me what is this peripheral Stem Cells

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 #7 on: December 12, 2007, 06:18:12 AM »
Hi Rupali,

They are stem cells that are circulating the in blood stream. These are the same as the ones in the Bone Marrow. Collecting them is less painful for the donor as they are collected from the blood instead of Bone Marrow which is collected by a more painful method by going to the marrow between the hollow bones (even though in BMT the donor may be under anesthesia but recovery takes more time.)
اَسّلامُ علیکم Peace be Upon you
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Offline maha

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Re: HLA Mapped what further steps I have to took
« Reply #8 on: December 12, 2007, 10:35:01 AM »
Dear Rupali
If planning for a BMT in India, CMC Vellore is the best place with the highest success rate. We did talk to one of the haemo there and he informed us that for the past two years they have been doing Bmt using peripheral stem cells alone. The other painful method is no longer followed. When we asked about rejection, they said nowadays rejection was seldom fatal since they take utmost care. The patient is hospitalised for three months. They have a long waiting list for bmt`s, so probably by the time your little girls turn comes she would probably be 2 years old. All the best.
Wishing you hoards of luck,
MAHA

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Offline Manal

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Re: HLA Mapped what further steps I have to took
« Reply #9 on: December 12, 2007, 03:35:18 PM »
Dear Rupali

Actually i met the mother of this girl in the clinic by coincidence, we met two times but i don't know her number.  All what i know is that she has three children , first one is 18 years old, thal intermediate and is engaged in Dr. Suzane Perrine Study that is done in Boston medical center. Another boy who is normal and the third girl was mistaken in the aminothentiseis test when the mother was pregnant with her and the test said that she was not thal but turned out to be. As she said that she wasn't able to experience the same feelings again as with her elder son and so she did the transplant and the donor was her other son who totally matched with her. What i know is that she is now 3.5 years and she is still under supervision with her doctor, but doing fine and she said that she did it when the girl was 11 months.

I don't know if age is an important factor due to medical concerns or these are just regulations.

Manal

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Offline Narendra

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Re: HLA Mapped what further steps I have to took
« Reply #10 on: December 12, 2007, 05:31:00 PM »
I am   trying my best that I will go for BMT from a place having good success rate .I want to mention that till now we are making our mind to go for CMC(Vellore). If any one can help me in this regard or know any other option please tell me and forward me the details  I will be obilized .

Manal  can you please forward me the details of the child whose BMT  is done when she was 11 months

Regards
Rupali

Rupali,

CMC Vellore is the one of the best options. You might want to get the documents (material) they send with the current success rate and the precautions, cost, statistics at CMC through email.

Also, there is BMT done of a girl from Delhi, so it would be a good idea to talk to this family and meet them in person and ask their opinions. (I will send you their contact info if you want).

Another 6 year young, girl got her successful BMT done last december(2006) in Pune in Sahyadri Hospital under Dr. Shashikant Apte.

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Offline priya

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Re: HLA Mapped what further steps I have to took
« Reply #11 on: December 12, 2007, 09:28:14 PM »
Hi Rupali

As far as i know  CMC (vellor) is the best option for BMT in India.
I have e-mail of the Dr. who is head of the dept. for BMT done in CMC and it is
mammen@cmcvellor.ac.in.

you can write him and consult about your daughter.

love

Dimple

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Offline Ambika

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Re: HLA Mapped what further steps I have to took
« Reply #12 on: December 13, 2007, 12:40:46 PM »
Dear All

Thank you very much for your concern and suggestion  :smile

I will definately follow them Please pray for my daughter she came out successful from all this.

Dear narender

Can you please give the numbers as you have mentioned in your Post youknow my number 9811971982.

With regards
Rupali

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Offline Andy Battaglia

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Re: HLA Mapped what further steps I have to took
« Reply #13 on: December 15, 2007, 03:09:12 AM »
This isn't something I enjoy bringing up. Parents, please make sure you fully understand the risks before pursuing a bone marrow transplant for your thal child. Every clinic in the world experiences failures and parents need to understand that death is one of the possible outcomes from a BMT. Two Maldivian kids, Ahmed and Zeeshan, died this week after recently undergoing BMT's at CMC in Vellore. It is very sad and their families and friends are devastated. Ahmed was considered to be the healthiest thal in the Maldives before the BMT, but when the body rejects the transplanted bone marrow, the patient may die.

Please understand that it is your child's life at risk. Treatment is much better than in earlier years and a patient who complies with treatment has a good chance of living into the fifties and maybe the sixties or longer. Treatment should be carefully weighed against a possible cure using BMT, and the risks understood along with the understanding of the quality of life issues involved with each, before choosing a BMT.
Andy

All we are saying is give thals a chance.

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Offline Narendra

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Re: Risks of BMT
« Reply #14 on: December 15, 2007, 03:44:17 PM »
This isn't something I enjoy bringing up. Parents, please make sure you fully understand the risks before pursuing a bone marrow transplant for your thal child. Every clinic in the world experiences failures and parents need to understand that death is one of the possible outcomes from a BMT. Two Maldivian kids, Ahmed and Zeeshan, died this week after recently undergoing BMT's at CMC in Vellore. It is very sad and their families and friends are devastated. Ahmed was considered to be the healthiest thal in the Maldives before the BMT, but when the body rejects the transplanted bone marrow, the patient may die.

Please understand that it is your child's life at risk. Treatment is much better than in earlier years and a patient who complies with treatment has a good chance of living into the fifties and maybe the sixties or longer. Treatment should be carefully weighed against a possible cure using BMT, and the risks understood along with the understanding of the quality of life issues involved with each, before choosing a BMT.

I agree with Andy. As hard as it is parents should look at the possible outcome of failures in BMT. The failures do happen and that is why it is important to know, the chances of success and the factors that affect the success

Andy, It is always sad to hear about the loss of thals. Could you let us know who performed the BMT for Ahmed and Zeeshan? (Which doctors?).

 

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