Hi Mike and welcome from Rochester,
The doctors at Strong are good doctors for the most part, and are well equipped for treatment of thal, but I still feel it is essential that all thal patients be seen at least annually at one of the thal Centers of Excellence (Strong does not fall into this category in any analysis), and absolutely should be seen at the earliest possible date once the diagnosis has been verified. In addition to Philadelphia, in the East we have the centers at NYC and Boston Childrens. I would rank Boston slightly higher due to the doctor in charge at Boston, Dr Neufeld. If you are unsure about whether or not to pursue being seen at a Center of Excellence, think about the fact that you were told not to worry, about being thal carriers and that the very simple basic diagnosis of "failure to thrive" was not diagnosed earlier (I am not a doctor, but would have told you to demand a diagnosis at an earlier age, due to failure to thrive in a child of thal carrier parents). At 8 months, your son's Hb is barely above 7. Has it been explained that once there are two consecutive Hb readings under 7 that transfusions will be initiated? Do you also have the results of the hemoglobin electrophoresis test and at what at was this test done?
The founder of this group was a patient at Strong. She did not visit a Center for annual evaluations and planning. Her doctors did not meet together to discuss and plan her treatment. Even back in 2003 when my understanding of thalassemia was fairly basic, I was dismayed at the lack of communication among her various specialists. Today, my feelings about this go far beyond dismay. I feel this lack of coordination and lack of follow up on her ongoing condition contributed to her failing health and ultimate death. At the Centers, all of the care providers, including doctors, nurses, psychologists and social workers coordinate their efforts to give patients a comprehensive care that just is not found outside the Centers. It is fine to be treated at a local hospital like Strong, but for the best interests of the patient, annual visits to the thal Centers are essential, as is following the treatment program put in place by the Center. I highly recommend not relying solely on Strong. Regardless of what anyone at Strong may claim, they are not even close to providing the assessment and planning that one can receive at the Thal Centers. Even a simple concept like providing a comfortable setting for transfusion, that includes comfy recliner chairs and TVs was not Strong's idea. These chairs and TVs were paid for by money raised locally by Lisa's mom, and are now used by bot thals and cancer patients for treatment (my wife was one of the cancer patients who used these chairs). Every thal patient deserves the full comprehensive approach to treatment, and this is only available at the Centers of Excellence..