hello every one

Aslamoalikum and hello to all
My name is adeel I m from karachi (pakistan) my daughter is a thal major. I regularly visit this site but this is my first time to write at this form well u guys are really doing great specially andy , sajid , zaini and a lot more of u and specially I like to thanks zaini she is really very helpful. Well my wife is again  pregnant and she has done her cvs test  the reports will come next week and we r praying almighty allah that every thing will b ok guys plz pray for us well if everything will b alright we r planing for the hla and save the cord blood and go for the bmt I already spoke the cryocell person . Well I want to know one thing from u guys does anyone know that which hospital is best for cbt I heard a lot abt cmc velor from this site well anyone plz guide me 
Thank u all   

Dear Adeel,

Welcome to the website.  You are right, Zaini is an incredible and inspiring person.  We are so glad to have you here.  I wish you the best for your cbt report.  We are always here to support and guide you. 

Sharmin

Welcome to thalpal I am sure that members who know the best hospitals in this area will be able to help you and good luck in the results

manal

Hello Adeel!
Welcome to thalpal...
I think you can check with Ambika regarding CMC Vellore. They had their daughters transplant done there if I remember correctly.
All the best with the test result!
Love and luck,
Madhavi

Asslamoalikum and hello to all
Thanks for all of your replies well guys alhamdulillah the cvs results came out and they are poitive that the baby is thal minor and we also done the hla class 2 from that dna sample and it is  fully matched with my daughter that means the chances are rises up to 50 % that it will be a full match but the hla class 1 test will be done after the birth so we are praying for that  neways I want your opinion specially from andy that should I preserve the cord blood or not cause I discuss with many doctors and do a lot of research about it but I found it that bmt is much better option then cbt cause the chances of rejection is less in bmt and another thing i email at cmc vellore and they told me that dr mammen chandey resign there and he is currently working at tata memorial center kolkata so anybody kindly help me to get the info about this hospital
Best regards
Adeel rafi

Congratulations Adeel , I am really happy for you and i believe that in any way you should keep the cord blood. You never know, it may be used by your daughter. Even it could be used by the baby later in life for any reason or another. The usage of stem cells increase by time in various fields

manal

hello everyone
Thanks manal for your reply I will surely do that one thing more I want to know from you guys my daughter is 15 months old she was diagnosed at the age of 3 months and her first transfusion was at the age of 4 month that means she had transfused around 10 times but her feritin level rises up to 1500 yesterday I met a doctor she is not a hemotologist but during discussion I told her my daughter feritin level she told me that my daughter depositing more iron then other children and her feritin level is very high that makes me confused cause I regularly met her hemo but he never said me that . I want to know your opinion guys
Adeel 

Dear Adeel,

Firstly, congratulations on the cbt results and it is good to know that the baby is likely a match for your daughter. 

What is your daughter's age?  Have you discussed the possibility of using exjade/asunra for your daughter?  Perhaps start with a really low dose - splitting the dose twice daily or even alternate days in the beginning. 

I wish you the best,

Sharmin

Hi Adeel,

I would say keep the cord blood. I don't know if this is done yet in India but you should contact the BMT center and ask about cord blood transplants there, but a newer approach to CBT uses a less harsh chemo preparation. The result is a mixed chimerism where both the original and donor cells co-exist, without rejection. Only about a 20% engraftment is needed to produce a hemoglobin level of 10. This is a fairly new approach, so its use is not yet widespread, but if available, my opinion is this is preferable to a BMT. You should talk to the doctors at the BMT center and see if they can use the cord blood for a transplant, before you make any decision.

Dr Chandey is now the head of Tata in Kolkata. The hospital number is below.
+91-33-2281-0175

Hi Adeel,

Because your daughter has been transfused since a very early age, she will most likely require some chelation before age 2. I agree with Sharmin that starting on a low dose of Asunra sometime in the next few months would probably be a good way to get started with chelation and would also help your daughter's body get used to the new drug.

Asslamoalikum and hello to all
Thanks a lot for your replies well andy we already started asunra to her . Her hemo suggest 200 mg as per her body weight but we are giving her only 100 mg like u said her body use to it and after one week I will give her full dose  well she is got a reaction to it her stool color is change to clayish like well what do u think its a mild  reaction or its something serious well I contact her hemo he suggest to test her stool DR and LFT. any suggestion from you guys and another thing I want to know I gave her osteocare 5ml , folic acid 2.5 mg ,seven sea' s haliborange 5ml and ip6 500mg jarrows formula daily is that enough supplements or I have to give something else
Best regards
Adeel rafi

Where stands cbt? Cord blood transplant. Only 20%? I learn a new thing.
Welcome to our board as an active member!
Congratulations on the results and we will get your daughter's fe level down!

Hello everyone
We have started  asunra to my daughter before started asunra her feritin level is 1500 but after started asunra it decreased to 1167 from 1500 alhamdulillah well i want to know a thing from andy and u guys well does asunra work very quickly cause we have started it 20 days before and it incredibly help to decreased the feritin level and one thing I notify u that I am also giving her ip6 500mg daily and as for asunra her hemo suggest us 200mg daily her weight is 9 kg and her age is 16 months well we are giving her 100mg in the morning and 100mg in the night .
Best regards
Adeel

Because your daughter started chelation at such a young age, the iron never had a chance to build up in the organs so once Asunra was started, the iron load is diminishing quickly. Excellent news!

Wow thats great,keep it up and your daughter will never have iron overload .

Zaini.