Thalassemia Patients and Friends

Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: kaleem on January 14, 2019, 06:48:44 AM

Title: BMT of my 2 year Old Kid
Post by: kaleem on January 14, 2019, 06:48:44 AM

my 2 year old kid is in hospital for BMT and today its post transplant day 19 and his WBC fell from 6000 yesterday to 4000 today.. doctors started Cyclosporine orally but he is not taking it at all.. yesterday we mixed it with yogurt and then he took it with ease.. now i m afraid that this fall in WBC might be due to mixing medicine with yogurt?? his hb also fell to 7.6.. kindly guide me

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on January 16, 2019, 12:29:25 PM

on day 19 post transplant my kid received blood transfusion as his HB was 7.6. he also got plateletes transfusion.. doctors switched again to IV for for medicine as he was not taking oral medication. yesterday was day 20 and his WBC was 8 and his Filgen injection was reduced to one per day.. previously he was getting 2 Filgen injections each day.. today on day 21 his WBC reduced to 4.8 and his HB is again 8.8.. need your prayers..

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on January 17, 2019, 03:30:33 AM

yesterday he received one filgen injection and today is day 22 and his WBC fell more to 3. he got another blood transfusion yesterday .. platelets are getting transfused everyday..

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on January 18, 2019, 12:52:28 PM

yesterday he received 2 doses of Filgen and at mid night he was also transfused with platelets.. his early morning results were good.. WBC was 8.8 and Platelets 55000.. HB was down from 10 to 9.6.. today is day +24 ..

Title: Re: BMT of my 2 year Old Kid
Post by: Fahed_FN on February 19, 2019, 08:52:34 AM

All the best dear,

Hang in there, all will be good soon

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on February 19, 2019, 08:12:37 PM

thanks for your kind messege... he is not out of hospital for more than 2 weeks.. last week his hb was 11.2 but it fell to 9.2 two days before.. he actually got a severe diarrhea at BMT unit which still persist till date.. according to doctors its a GVHD and he is receiving Methyle Predisonole 2 mg per kg in addition to other medicines...

Title: Re: BMT of my 2 year Old Kid
Post by: Andy Battaglia on March 03, 2019, 05:52:24 PM

This is all very common after BMT. Hopefully, the GVHD will soon be under control.

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 04, 2019, 06:22:27 PM

today is day plus 68.. we sometimes give him uncooked banana as well as yogurt.. we will be more careful in future.. his cough is better now.. should we check CBC blood test weekly basis or after two weeks..

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 04, 2019, 06:26:48 PM

thanks andy for the reply.. his gvhd is a bit better now.. last week hb was 9.8..

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 09, 2019, 04:09:27 AM

yesterday his CBC report shows HB 8.3.. i made me worried.. hopefully will rise again

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 09, 2019, 09:23:38 AM

today is day plus 72... and hb yesterday was 8.3.. on day plus 59 it was 9.8.. can any one share the experience...

Title: Re: BMT of my 2 year Old Kid
Post by: Andy Battaglia on March 10, 2019, 10:41:02 PM

I think his Hb should be checked at least weekly as long as it continues to fluctuate.

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 11, 2019, 11:41:10 AM

thanks andy.. today is day plus 75.. his HB today was 8.3 again.. doctor advised to increase cyclosporine from 0.5 ml twice a day to 0.6 ml twice a day..

Title: Re: BMT of my 2 year Old Kid
Post by: Andy Battaglia on March 21, 2019, 12:13:09 AM

Has there been any improvement since the cyclosporine dosage was raised?

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 25, 2019, 02:07:48 PM

today his hb drop to 7.4 ... two weeks ago it was 8.4.. tomoro will meet doctor.. worried too much

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 26, 2019, 09:19:27 AM

today doctor told that due to low hb of 7.3 the kid needs blood transfusion.. will also do his chimerism to check percentage of donor cells.. its day plus 90..

Title: Re: BMT of my 2 year Old Kid
Post by: Fahed_FN on March 28, 2019, 04:16:16 AM

Dear Kaleem,

just a quick question since i did not pick up the journey since the beginning, who was the donor and how much matching?

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 28, 2019, 05:04:26 AM

thanks fahed.. donor was his 10 year old elder sister and 100% HLA match.. he is taking Cyclosporine, Eltrombopag, Fluconazole, Acyclovir and one antibiotic.. no steroids...

Title: Re: BMT of my 2 year Old Kid
Post by: Syeda on March 02, 2020, 04:24:38 AM

Hi Kaleem,
Wanted to check in how things are going with your child now after several months have passed- have things improved?

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on March 04, 2020, 07:11:02 PM

transplant was unsuccessful.. the kid is now dependent on blood transfusion again every 3 to 4 weeks.. he is otherwise fine but the stool color and composition is still not like it used to be pre-transplant.. are you planning for transplant?

Title: Re: BMT of my 2 year Old Kid
Post by: Himanshu Kumar on April 12, 2020, 04:16:33 PM

Dear Kaleem,

Unfortunate that the BMT has been unsuccessful. Where did you get the BMT done. What was the reason behind failure, what was the chimerism % after transplant. And most importantly how is the child doing.

Regards,
Himanshu

Title: Re: BMT of my 2 year Old Kid
Post by: kaleem on April 15, 2020, 04:10:44 PM

BMT was done at The Aga Khan University Hospital, Karachi Pakistan. During BMT kid got a very diarrhea which did not stop even at the time of discharge. Chimerism within one month of BMT was 95 percent. At the end of 3 months it declined to 21 percent. Doctors didn't say any specific reason. But based on our observation may be Gender missmatch. Because two other BMT at same hospital also failed, I noticed that donor and recepient were of opposite genders..

But I am not sure why it failed. Our kid is now otherwise completely active and fine.