Need information after BMT

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Offline ahmedfayyaz

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Need information after BMT
« on: September 20, 2010, 07:39:07 AM »
Dear Andy

My four years old son was Thal Maj who passed thru BMT 10 month ago. still taking medicens and his current HB is 9.5 ,


I need to know that what kind of care still have to maintain for him ,

1- Can he go to school
2- Wearing mask is nessary for him at every where ?
3- Can he eat every thing freely, or is there any special diet.
4- Is there still any chance for Transport Failure


Kindly inform me as i am very much woried about above


Regards

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Offline nice friend

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Re: Need information after BMT
« Reply #1 on: September 20, 2010, 07:48:55 AM »
Hi Ahmed Fayyaz,
 how r u ?? ...  :welcome2 ..  i hope you'll find this community very helpful .. plz keep posting and stay in-touch with us .... its nice to hear that your child has safely passedthrough BMT i hpe , wish and pray that he get 100% cure to thalassemia in the result of it ... Best of luck for your child ... hope to hear  from you in future too .. i m not  senior member , i hope that Andy and the others wil lreply to your question very soon ...

Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Zaini

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Re: Need information after BMT
« Reply #2 on: September 20, 2010, 08:00:37 AM »
Hello Ahmed Fayyaz,

I don't have any personal experience with BMT but one of our members manojmass's son had BMT done recently,you can read all about it here,

http://www.thalassemiapatientsandfriends.com/index.php?topic=3125.0

And you can PM her as she would be able to guide you properly.

Zaini.

^*^Xaini^*^

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Offline Madhavi

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Re: Need information after BMT
« Reply #3 on: September 20, 2010, 01:22:34 PM »
Hello Ahmed!

I have already replied to your PM...But I saw your questions now and will answer them here as well in case I missed them in the PM.

1- Can he go to school-Mohanish, my son began going to school at 10 months post transplant, as per the doctors advice. This is not the case with all patients. Some complete the one year anniversary and then start school whenever the doctor feels is ok.
2- Wearing mask is nessary for him at every where ?-Mohanish stopped using the mask everywhere else except the hospitals since the time he began attending school....
3- Can he eat every thing freely, or is there any special diet. Mohanish has been on a regular diet since 3 months post transplant. No restrictions whatsoever-including icecreams, colas....everything. Of course if the outside food is unhygienic then better avoid it-which is the case for every kid!
4- Is there still any chance for Transport Failure-this one is tough to answer. I think your doctor is the best person to judge depending upon your sons conditions and test results and individual case. But considering the current results and mode of treatment plan, I doubt if there can be any delayed cases of failure.

For now, Mohanish attends school. The last visit to the doctor was the last one! He does not feel that we should follow up with blood tests any more. After 1 more month, we will discontinue his only medicine-ciclosporin(10mg od) and then wait for 2 months to check with the doctor regarding his vaccination.

Ahmed, each case is very unique and it is difficult to compare with another. I have realised that during all the opd follow up. The parents tend to compare with other children and either feel glad or sad thereafter. But each kid has a different story. So your doctor is your best guide!

Wish you all the best!
Madhavi
Love and luck to all...

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Offline Andy Battaglia

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Re: Need information after BMT
« Reply #4 on: September 20, 2010, 03:21:18 PM »
Thank you Madhavi. I am in no way qualified to answer this question and you have answered it beautifully.
Andy

All we are saying is give thals a chance.

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Offline Madhavi

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Re: Need information after BMT
« Reply #5 on: September 21, 2010, 12:50:40 AM »
Dear Andy,
Unlike your indepth knowledge, dedication, love, kindness...I just have my experiences to share with anyone who could benefit from that!
Thank you!
Madhavi
Love and luck to all...

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Offline ahmedfayyaz

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Re: Need information after BMT
« Reply #6 on: September 21, 2010, 05:45:06 AM »

Dear All

Many many thanks to you all for your quick and kind replies for my Post which is very beneficial for me.


Regards
Fayyaz Younus
Karachi, Pakistan

Re: Need information after BMT
« Reply #7 on: September 22, 2010, 07:02:10 AM »
Hi Everyone!!!!!!!!!!! :bighug :welcomewagon
     I really say thanx to all of you as was jst going thru :happyyes these posts and i believe it is so nice tosee that here everyone takes time for one another to share care and really help in some or the other way....m so glad to be her amongst u all....in the begining when my child was diagnosed wth thal major was so hesitant to face the world or talk to anyone bout this  :banghead...........but now sometimes i dont geel like going to the doc first if my childs reports come i quickly log on and post the results here .....cos i know i will get all the advises and wont have to wait for an appointment wth the doc........................................................and madhavi m glad that mohnish has passed the tough phase of life and still u r there for all of us here....................thank u so mch :hugfriend

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Offline Zaini

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Re: Need information after BMT
« Reply #8 on: September 22, 2010, 07:24:44 AM »
Hi Everyone!!!!!!!!!!! :bighug :welcomewagon
     I really say thanx to all of you as was jst going thru :happyyes these posts and i believe it is so nice tosee that here everyone takes time for one another to share care and really help in some or the other way....m so glad to be her amongst u all....in the begining when my child was diagnosed wth thal major was so hesitant to face the world or talk to anyone bout this  :banghead...........but now sometimes i dont geel like going to the doc first if my childs reports come i quickly log on and post the results here .....cos i know i will get all the advises and wont have to wait for an appointment wth the doc........................................................and madhavi m glad that mohnish has passed the tough phase of life and still u r there for all of us here....................thank u so mch :hugfriend

Couldn't agree more.

Zaini.
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Offline Dori

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Re: Need information after BMT
« Reply #9 on: September 23, 2010, 03:45:35 PM »
I find the restrictio by my friend before her stem cell transplant very free. The room are absolutely not clean. They used one cleaning thing for two hours and cleaned literally everything (yes, also the toilet) with it. I mean this should be the most proper department of the hospital, right?
She received her new stem cells 3,5hrs ago. I havent heard of her yet. I hope she's doing well.

How much engraftment does your child has? Was it a familair donor? Just curious.

 

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