New Member, please help me.

Yes, add the EPO to the hydroxyurea and wheatgrass. If his Hb doesn't rise after this, it will be time to commence transfusions.

Hi,

It is also advisable to take anti oxidents like Natural Vitamin E , L-Carnitine, Magnesium along with Wheat grass while taking Hydrea.

Is it used?

Yes, especially L-carnitine and magnesium, which have been shown to enhance the value of hydrea.

Hi,

Child is transfused on 4th July as Hb dropped to 6.4 and RBC 3.0
i am continuimg Hydrea 250mg.

Rgds,
Dip

Hi Andy,

My Child was transfused (15ml/kg) 5 weeks back when his Hb was 6.4.
Today after 5weeks I got the new cbc report with Hb=8.0.
Is this new Hb have effect of transfusion after 5week or it is his own hb.
I have been advise if Hb falls below 7 he need transfusion. As the child is intermedia (only 3 transfusion in 7 yrs), should I wait for hb to below 7?

your suggestion /feedback is appreciated.

Thanks
Dip

Hi Dip,

As long as his growth and development is normal, you should continue to wait until Hb goes below 7 before transfusing. If you feel he has low energy and his growth isn't normal, then transfusion should be done. 5 weeks after transfusion, the blood will be predominantly his own.

Thanks! dear Andy.

Regards,
Dip

Hi Dear Andy,

My Son is HbE-Beta Thal.
Currently his Hb is 8.0 after 6th week of transfusion. Can a wait for another one or two week for next transfusion?

Regards,
Dip

Hi Dip,

Does he normally transfuse regularly? If so, 8 is low for pre-transfusion Hb. It's best to keep it above 9 at all times for patients who transfuse regularly.

Dear Andy,

we put him on regular Tx from January onwards when his Hb dropped to 6.4.
currently he is nearly 8 yrs old.wt=21kg height=125cm.

Last time in march when he was transfused after 6th week, his hb was 9.1
I was expecting same but dont know why it has been reduced to 8 within 6 weeks.
I am planning to transfuse him this week end.

Thanks for your suggestion

regards,
Dip

Hi Andy,

My Son is transfused last weekend. His Hb was 7.8
I have one quest
My son was quite good with a hb range of 7-8 till 7.5 year.
Why we should be worried that pre transfusion hb should be more than 9.0 in case of regular transfusion option.

Thanks in advance.
Regards,
Dip

Dip,

The higher Hb allows for normal growth and development. If the child's growth lags behind others the same age or if there are obvious changes to the bones in the head and face, or if the child is sluggish and can't keep up, transfusion should be regular and the Hb kept above 9.5.

ALso want to add to ANdy's comment that keeping Pre Tx Hgb between 9 and 10 helps to keep spleen healthy and bone marrow from overworking. This ensures bones are healthy too. With exjade, Iron overload should not be a concern if it is tolerated. if you keep the Hgb up with regular transfusion, you will see there is no difference between his energy level and other normal kids.  he can do any activity that he wants to.

Dear Andy & Bostonian_04

Thanks for your reply and Suggestion.
I am only worried if we do regular transfusion for few years and after that if we stop can he maintain normal HB of 7-8,what he was maintaining before regular transfusion??

Thanks & regards,
Dipankar

Dip,

It all depends on how well a patient does with low Hb. If growth and development lag and bony changes take place, regular transfusion is a must. Transfusing now will not cause any permanent changes. Once a patient stops transfusing, the bone marrow will again become more active and after a few months, the Hb will be as it was before transfusion.