Packed Cell

Hello Andy,

My 22.50 months babies weight is 13 kg.Doctor prescribed her 250 ml blood for transfusion as her hb is 7.40 after 7 weeks of transfusion.We have given her the 250 ml after converting as packed cell.Doctor said after packed cell the 250 ml will be 180/190 ml and that will be enough for her.

Please advice.....

Dear all,
please share all of your experiences about packed cell...

As my baby is Thal, everything I want to do or manage as well as my best.All are tolerable but before transfusion every time the pain of canola and my babies tears not not not tolerable dear....Every time when she cry then I am also....

Lokkhi,

It is important to test the Hb before transfusion. The Hb should not be allowed to drop below 9.5, as this hinders normal growth and development. The amount of blood is correct at this point. The transfusion frequency remains to be determined through experience.

Dear Andy,

When hb was 7.40 then my baby got transfusion and after 1 week her hb is 12.Is it possible?After 7 weeks again it stand on 7.5 to 7.How much unit increase by 250 ml packed cell transfusion.We are confused.We decided we will give her next transfusion after 5 weeks then may be it will be 9.5 to 9.

Please share your opinion....

Dear Lokkhi Maa,

My experience has been that HB drops at the rate of anywhere between .10 to .15 everyday. I used to monitor HB drop between two HB tests for my daughter and over several measure I concluded that in my child's case the HB would to drop at the rate of .1 to .15 every day. The HB also to falls faster in case of fever or any other infection. You may take the average HB drop rate as .12 and plan your next hb test or transfusion accordingly.

I would also like to know if anyone else has also tried to measure rate of drop of HB and planned their transfusion accordingly. what has their experience been.

Trust this helps.

Regards,
Himanshu

Thank you Himanshu.Its really helpful information..

Please keep us sharing with your experience...

 Dear Himanshu,

According to your information I found that may be her HB drop @ rate .12 and to maintain 9 to 9.5  is really difficult.For that she have to get transfusion after every 4 weeks.This rapidly pain how she will suffer

Dear Lakkhi Maa,

Sorry for late response to you. You had a query on one of my post. I can feel your situation better as ur baby and my baby seem same problem.

What medication are u following now? This is important. Because, Naba, my baby is maintaining around 9 for last 4 months, Alhamdulillah. She is taking Hydrea in every alternate day, Defrijet 250mg daily and Folison.

Please pray for her.

If you want to know more, I will be available on +88 01730020405

Thanks,

Mahbub

 Hello Mahbub,

Please share your Bangkok journey with us.How is your baby now?Its really good that she is maintaining HB 9. Is this result came after taking Hydrea ? I want to start Hydrea but doctor and Andy also advised to wait upto 2 yrs old. Now she is 23 months old and she is a good energetic baby you know !

Are you giving her wheat grass?Wheat grass and Hydroxyurea combination increase HB level ( as I know from this site). Maritain HB 9 by only taking Hydrea or she needs transfusion also..May Allah remove her transfusion pain and experience.

After 11 transfusion my babier serum ferritin found 459 so still I have not started any iron chealaton therapy.She is taking :

Folic Acid 2.5 mg (daily)
Wheat grass Tablet 500 mg 1 tablet (daily)
Vitamin Capsule E 200 IU (weekly 4)
Cod liver Oil Capsule (weekly 4)
Zinc B Syrup 5 ml (daily)
Multi Vitamin LIVEWELL 5 ml (weekly 5 days)

I also give her green tea and milk with her meal.

Please share your babies activity and experience about Hydrea..It is reduce transfusion but not effective for every Thal patient...

If you have any update information about Hematology Doctor and Thalassemia (as you live in Dhaka) Please advice.

Pray and best wishes to your baby and all of child's of the world..

Thanks

Hello Andy,

My babies current weight is 13.5 kg.When her hb level reach at 9 then we give her transfusion @ 15 ml per kg = 180/200 ml.This time we test her hb level and SF after transfusion.Her hb report shown 13.10 and SF 926 as I inform you.

Last night we visited with our local doctor for checking my babies health.After study he advised, after transfusion hb level 13 its impossible.When my baby first got transfusion then her hb found 7 and after transfusion it was 12.Always 6 weeks after transfusion  we found her hb 7.5 to 8.For that last 2 times we gave her transfusion after 5 weeks.But Doc said may be she is taking excess blood that not necessary.We take her test from a reputed Diagnostic Center but Doc claims the report is wrong or we giving her too much blood.

As her SF level is 926 he advised wait 3 months and then again test.When we say about her seizure problem before 1.5 years ago and still taking phenobarbital he reply then chelation therapy would be impossible for her .She have to take injection for SF but not mention the name.He also advised if we apply any iron chelaton medicine then may be her seizure will be arise.But we don't know..

Andy, pls advice and help us what we will do for my babies next transfusion?When hb level 8/9 after taking 200/180 ml then how much hb level arise?Is my babies report wrong?

Lokkhi,

Are you anywhere near Dhaka?

Yes, I live in Chittagong near Dhaka. Its a port city and called 2nd capital of Bangladesh.

Pls advice Andy.I am waiting for your reply to take decision about my babies next transfusion.

Dear Lokkhi Maa,

My experience has been that HB drops at the rate of anywhere between .10 to .15 everyday. I used to monitor HB drop between two HB tests for my daughter and over several measure I concluded that in my child's case the HB would to drop at the rate of .1 to .15 every day. The HB also to falls faster in case of fever or any other infection. You may take the average HB drop rate as .12 and plan your next hb test or transfusion accordingly.

I would also like to know if anyone else has also tried to measure rate of drop of HB and planned their transfusion accordingly. what has their experience been.

Trust this helps.

Regards,
Himanshu

Hi Andy,

According to the above information if daily HB drops .10 to .15 then after 5 weeks it will be drop 4.20 (suppose .12 drops daily). After trnasfusion if my babies HB arise 13 then after 5 weeks it will be 8.8.As its near about 9 so we are giving her transfusion.


Am I right Andy?

What do you think my babies report is really wrong ?

Lokkhi,

Each patient is different, so the drop may vary, but yes, she shouldn't go below the 9-9.5 range before transfusion.

Have you ever taken your daughter to see Dr Robin at the Bangladesh Thalassemia Foundation Hospital? I want to make sure you are getting the proper advice and guidance.
30 Chamelibagh, Shantinagar
Dhaka, Bangladesh
+880 2 833 2481, +880 119 084 0191

Thanks Andy for the information.
 
Next Mar'16 I will go to Dhaka then we will must visit with him.

Andy pls help me to take decision about taking Asunra.As per Doc advised is it right Asunra and aother chelaton medicine cause seizure?If my baby taking both phenobarbital and Asunra it will be again arise seizure? We are really in confused..