Hi Kathleen,
I think what you are seeing with the advice about a BMT is a change in thinking that has occurred among doctors due to the extremely high success rates of BMT for thals in the US over the past decade. With success rates close to or at 100% at some hospitals, doctors feel much more confident in giving this recommendation for a BMT than in the past. A transfusing thal, whether intermedia or major, would be a potential candidate for a BMT. I believe that one still must consider all possibilities and also talk to parents whose children have gone through a BMT and learn what to expect during and afterward. Talk to Oakland but also contact Dr Krishnamurti at Children's Hospital of Pittsburgh. It's a decision where being informed as best as possible is the best course.
When the ferritin level is under control and maintaining at low levels, monthly testing isn't necessary. However, anytime there is a sudden upward spike in ferritin, you may want to test one month later to see if it was really iron related. Most infections, even mild, will cause a spike in ferritin that is not related to iron levels, so a sudden rise should not be cause for much concern, unless verified later on.
Transfusing intermedias usually are in 3-6 week transfusion schedules. The fact that she is growing well and has a good appetite gives reassurance that her transfusion regimen is working well. Again, thinking has changed quite a bit and patients are kept at higher Hb levels because choice in chelators is making it easier to keep iron under control, making transfusions a better choice than having sluggish, under-developed patients. With the nutrient depletion that occurs in thalassemia, it's important to develop good eating habits in children, so they recognize the need for a nutritious diet. This really does make a big difference for thals, so try to steer as much of her snacking towards nutritious foods as possible. As a parent of one of the most stubborn boys who ever walked this earth, I can attest to how difficult it can be to get a child to eat good food, but with thalassemia, the extra effort does have real value to the health. Fresh fruit in season is really good, especially fruits like berries, cherries and watermelon. They are all loaded with antioxidants and vitamins. Citrus is best used as a between meals snack and not eaten with meals, as the vitamin C can add to the iron absorbed from food. Citrus is actually a good food for thals when used in moderation between meals. Thals often develop vitamin C deficiencies and this can help to avoid that. Is she taking folic acid and vitamin E?