MRI and my 3 year old son

My son does not have Thalassemia but receives regular transfusions.  He is 3 years old.   He does not yet have a diagnosis and they are suspicious he has an ultra rare blood disease.  His ferritin has been around 2000 for about 8 months or so now and the exjade is not helping him.  They want to do an MRI and are calling me back to tell me if our local hospital can do it.  To my knowledge, I thought there were only special facilities that can do this.  My question is; Do you know if most hospitals can do this test or only specific ones?  Thanks in advance for taking the time to respond. 

Hi hopefulheart,

Where are you located? I will refer you to one of the Centers of Excellence that deal with hemoglobinopathies. I do believe this will be your best chance of getting an accurate diagnosis.

I don't know where you live, but I am Louisville KY and the closest MRI that scans for iron is in Cincinnatti OH. My daughter has Diamond Blackfan Anemia and at some point will have to get this scan (her iron is not yet high enough to start chelation).

I wish you and your son all the best,

Scott

Andy,

We live in Michigan.  The doctor's called me back and said Gabriel's ferritin is now 2300 and there is a Thalassemia center in Chicago.  Has anyone heard of it?  It looks like we will be going there unless I suggest another facility that may be better. 

The Chicago center is one of the Centers of Excellence and Dr Thompson is wonderful. Regardless of the syndrome that your son has, a well managed treatment program is essential and Dr Thompson can put this in place. The Centers of Excellence can design a treatment plan to be followed locally, and normally annual visits to the Center for assessment will also be part of the program. We do have members here who use Chicago Children's and they have been very happy. They are very experienced with blood disorders and hopefully can also discover exactly what your son has.

Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Director: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618

Thank you so much!  It's one less thing to worry about.  I appreciate your response. 

Rebekah