Thalassemia Patients and Friends

Discussion Forums => Thalassemia-related Issues => Topic started by: ALueondee on June 02, 2016, 02:15:44 AM

Title: First blood transfusion for my daughter
Post by: ALueondee on June 02, 2016, 02:15:44 AM

my daughter just turned 4 and was told by her doctor yesterday that she should start having blood transfusions due to bone deformities that have began in her face. She has E beta Thalessemia and her hemoglobin is currently 8.3. Has anyone else had to start transfusions due to bone deformities? Also, how can I best prepare her for her first transfusion? Any advice is welcome! Thank you!

Title: Re: First blood transfusion for my daughter
Post by: Andy Battaglia on June 04, 2016, 04:03:51 PM

Preventing bone deformities and promoting proper growth and development are main goals of transfusion in children. It is unusual to see this problem at an Hb above 8. Is your daughter being seen at a thal center?

Title: Re: First blood transfusion for my daughter
Post by: Lokkhi maa on June 05, 2016, 02:56:02 AM

Hello Andy,

Its shocking...First time heard about the bone deformities due to transfusion.But the HB level not so bad.All parents should have to careful about transfusion..

Title: Re: First blood transfusion for my daughter
Post by: ALueondee on June 08, 2016, 11:54:55 AM

She is being seen at Lurie Children's Hospital in Chicago, which I believe is a thal center. Her hemoglobin has always been above 8, and only once dipped briefly to 7. I was surprised that the doctor wants to start blood transfusions because her energy level is good. However she seems to truly believe my daughter is developing bone deformities in her face.

Title: Re: First blood transfusion for my daughter
Post by: Canadian_Family on June 08, 2016, 03:52:00 PM

Bone Deformities at level 8 and above are unheard of, kindly consider taking another opinion before starting transfusions.

Title: Re: First blood transfusion for my daughter
Post by: Andy Battaglia on June 11, 2016, 04:54:43 PM

Lurie is a very good thal center, but I would ask what has been done to verify there are bone changes?

I do think there is a trend to transfuse intermedia patients who are borderline with their Hb levels, because in the long run, the Hb will probably drop more and transfusions will eventually be needed. However, since this may not occur until the patient is an adult, I am still somewhat torn on this. On one hand, quality of life will improve in general, but the problems of transfusion, such as antibody reactions, can crop up earlier.

Title: Re: First blood transfusion for my daughter
Post by: Sent on June 22, 2016, 03:29:39 AM

Hi Andy,
May I ask you a question?
Do you know any Thal center care for children in Canada?
Thank you and best regards,
Sent

Title: Re: First blood transfusion for my daughter
Post by: Andy Battaglia on June 23, 2016, 08:09:37 PM

Where in Canada? It's a big country.