Discussion Forums > Thalassemia Major

Some good news!!!

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Sharmin:
Thank you all so much  :hugfriend :hugfriend

It feels so good to be able to breath and relax, things are good right now.  Your wishes mean so much.

Wishing you all many many reasons to smile and be happy. 

Love,

Sharmin 

Sharmin:
Hey guys,

His hemoglobin after 5 weeks is 90 today.  He is transfused on Friday, I hope that this continues to be the case - he used to be transfused avery 4 - 5 weeks when he was younger. 

I hope that our case helps others in our situation seek the right treatment and get good results.  I have had numerous PMs and questions regarding autoimmune hemolytic anemia and people asking how the treatment is working for my son - if I have missed anyone - please note that things seem to be working and I think it is definitely worth trying.  Best of luck,

Sharmin

Zaini:
Sharmin,

Great news  :hugfriend sometimes i wonder why intervals between my daughter's transfusions has decreased,she is regularly goi ng on three weeks intervals,last time her hb was 10.2 so doc gave us the appointment for 4 weeks,but let me tell you that this is the last week and she looks pale and gets tired easily,so i am guesseing her hb must be low,
As you know i have tried so many things to increase her hb,to atleast get back to the normal routine of four weeks,because if intervals keep decreasing i fear where we would end up.I wonder what more i can do  ???.

Zaini.

Manal:
Zaini, did you check if there are any antibodies running in her blood???

manal

Sharmin:
Hi Zaini,

It is common for children to require more transfusions while they are active and growing, and most likely that is why she is needing blood more frequently.  Some of the thal majors I know here, who are healthy adults now, also say that their tx requirements increased for periods of time while they were growing.  A three week interval at her age is not too much.  How much blood does she get per kilo of her body weight?

It is good idea to make sure that she is getting fresh and very well matched blood - for this if it is at all possible you can try to get genotype testing done.  Sometimes children can develop minor antibodies, which don't cause major issues but are aggravating enough to cause an increase in tx frequency.  The genotype testing would reduce the likelihood of her developing too many of these antibodies. 

It would be a good idea to have the blood bank do a thorough investigation of her blood to see if any antibodies are present - if they are any antibodies they can be avoided, and they should be avoided to make sure that auto antibodies are not triggered.  But remember, that what happened to my son is quite rare - and even if it occurs it is treatable as it has been for my son.  If the first ritux doesn't work - they often repeat it and the second course of treatment often resolves the problem.  But most likely, it is nothing like this. 

By the way, if her tx requirements have increased, make sure that her chelation is adjusted accordingly.  We fell behind on this a little and it didn't show up in the ferritin but it did on the SQUID, and I know you don't have SQUID available in Pakistan. 

Take care and keep us updated,

Sharmin

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