Finding HbH Constant Spring

Our son Leonardo Chun Ming (3 years old:adopted from China since July 2011) he's confirmed to have this disease.
We are looking for friends to exchange all news about this disease and her therapy.
thank's in advance !

My son was also adopted from China in April 2010 from Shenzhen, at age 3.  He has beta thalassemia major, and is transfused every 3 weeks.
Was your son transfused in China regularly?
Has he been transfused since coming home?
I know someone who adopted a child from China who was supposed to be beta thal major, but upon getting to CHOPS in the US learned she is Hemoglobin H, Constant Springs. She's been home over a  year and has needed only one transfusion!
Have you been to a thalassemia treatment center, or will your hematologist consult with one?
Please consider joining our Yahoo Group for parents who have chosen to adopt children with thalassemia. There are several members whose children have HBH Constant Springs, some requiring monthly transfusions, and some needing more infrequent transfusions.
http://groups.yahoo.com/group/adoptingthalassemia/?yguid=326469503
Nicole

Hi Nicole
thank's lot for your reply!
We d'ont know if he has been trasfused in China but we mind that no because his hb level in Italy was less more 6.
Now after two trasfusion and, I add, better alimentation, his hb level after 2 months without trasfusione it s 7.6!
Friday he'll do third trasfusion because the better level of hb must fix about 9 for a best growth and develope.
Thank's lot for the link; Now I'll joining!.
For your son have you tried folic acid and a rich alimentation of vegetables and fresh fruit. Pasta, meat and moreover fish must be seriously considered to improve natural capacity to produce hemoglobine.

I also responded to your post on RQ, as did at least one other mom with a daughter from China with thal.

Yes, my son takes folic acid daily. However, no diet improvements will enable his bone marrow to produce red blood cells. This is a genetic condition. It is not an iron deficiency form of anemia.  As you may already be aware, optimal hemoglobin levels for transfusion depedent patients is to be above hemoglobin of 9. For example, when my son's falls between 9 and 10 we are heading in for a transfusion...

I can imagine it is quite difficult adopting a child with SNs that you were prepared for and then finding out he also has thalassemia (alpha intermedia, HbH Constant Springs). I am sure you are thinking that thank goodness he did not remain in China!! and that he became your son. You know you will get him the medical care he needs! In China, at the SWI, if they did not realize he had Constant Springs, he could have become very ill.

Please keep us posted!
Nicole

What's RQ  ?

What's RQ  ?

It is Rumor Queen - the largest online support group for people who have or are in the process of adopting children from China. Someone just posted about finding out their 3 year old son (home since this summer from China) has Hemoglobin H Constant Springs...I thought it was you, as I was thinking it was too much of a coincidence to have two families in the same situation, with finding out Hemoglobin H Constant Springs in a 3 year old adopted this summer from China...
Nicole

It is Rumor Queen - the largest online support group for people who have or are in the process of adopting children from China. Someone just posted about finding out their 3 year old son (home since this summer from China) has Hemoglobin H Constant Springs...I thought it was you, as I was thinking it was too much of a coincidence to have two families in the same situation, with finding out Hemoglobin H Constant Springs in a 3 year old adopted this summer from China...
Nicole

I apologize. It is a different family. And, they were not home since this summer - only a month now. And discovered their son has HbH Constant Springs in addition to the SN they were aware of. Sorry for the confusion!
Nicole

OK