homozygus IVS 1-6 T-->C

recent updates

during last few months hb became v. low
lowest 5.7 average around 6 or 6.5
so his doctor started blood transfusion
now last week it was his third blood transfusion
the doctor stopped hydroxyurea "bec. it is not effective"
and ask us "parents" and other son and doughter to do investigations to see if any one is compatible for bone marrow transplant

what are your comments?

 

Get the others tested to see if they are a match. There's no point in even considering a BMT unless you know there is a match. How often does he need transfusions?

we will next week

transfusion started recently
the doctor said every 2 weeks we will do CBC to see the hb and how frequent he will need transfusion
 

the others you mean parents and siblings?
or other relatives e.g. cousins, uncles?

"...ask us "parents" and other son and doughter "  Get the other children tested. Other relatives are unlikely to be matches.

i hope one of us will match

thanks

How is your child doing Khaled? Has testing be done?

thank you for asking
it came positive with his sister


now he needs transfusion every 3 to 4 weeks


they said this center is one of the best for BMT:
Mediterranean Institute of Hematology, International Center for Transplantation in Thalassemia
Roma, Italy
what is your opinion?


BMT is really very scary 

The centers in Rome and Pesaro, Italy are two of the best BMT centers on earth. Their success rate is very high and they are the most experienced centers.

Good luck wit hdeciding with the best step is for your child. You can any question here. There are more parents who went on this journey.

thank you all

here in Kuwait they started BMT recently 2 months ago & only done for 2 patients
but the doctor who is responsible is doctor Javid Gaziev from Italy

in your opinion
shall we do it her in Kuwait or Italy better?
thanks


 

is this is the center?
http://www.ptvonline.it/default.asp

recent updates

during last few months hb became v. low
lowest 5.7 average around 6 or 6.5
so his doctor started blood transfusion
now last week it was his third blood transfusion
the doctor stopped hydroxyurea "bec. it is not effective"
and ask us "parents" and other son and doughter to do investigations to see if any one is compatible for bone marrow transplant

what are your comments?

 

Hi,
Dear,

I was reading your posts, It looks my son following the same path...he is diagnosed very early in his age : 10th moonth onwards, He is "Heterozygous IVS 1-5 G-C mutation. his Hb ranging between  6~11.5% and twice he is on 4% g/dl when he become sick.
We are very confused and still could not able to decide to keep him on regular transfusion or not.  Doctor wants to avoid transfusion at this age.

I would request if you can share with the Hb Electrophoresis results(values) of your son if possible.

Sys