Questions you might ask when seeing the hematologist: (This list applies to adults and children) 1. What should my child/friend/spouse’s hemoglobin/hematocrit level be? 2. Does my child have the RSP-19 gene? 3. Are there antibodies present in the patient's blood that could be destroying red blood cells, making it appear as if there is little or no production? Has a Coombs test for destruction been done? (If so, this is not DBA) 4. Is a bone marrow aspiration sufficient to determine production or should an actual biopsy be performed? 5. What current treatments do you recommend? (Steroids and Transfusions are the most widely used treatments) a. If Steroids- Is Prednisone or Hydrocortisone a better choice? How long? What dosage? Side effects (how do you treat the side effects)? When should my child start seeing an Endocrinologist? (for extended steroid users) What should I do with the dosage if my child gets sick (such as cold, flu, etc.) What is tapering and how is it done? b. Would it be better for my child to start off with transfusions and then move on to steroids? c. If Transfusions-How often? (what should their hemoglobin/hematocrit be) What are the side effects? Does my child need a Implantable Port ( Mediport, Port-a-Cath, Pic line etc.) to make transfusions easier? When should we worry about iron- overload? How is the iron level measured? What is Chelation Therapy? Is a oral chelator a good idea? When receiving blood transfusions, is it better to have an exact match? For example, using the exact type instead of the universal type. d. You may want to ask about a Bone Marrow Transplant or other therapies. If you opt for a Mini-BMT, what should you be doing to prepare? 6. What should we do about immunizations? Are they safe and if so, which ones? 7. Does DBA itself have any side short/long term effects we need to be concerned about (ie. Diabetes, cancer)? 8. Have the hematologist explain to you what you should be looking for on your child’ s CBC (Complete Blood Count) and ALWAYS get a copy of the results. (I keep a 3- ring notebook) 9. Should I get a Medical Bracelet? What information should I include? Does my child need a Dexamethasone emergency syringe or Epi-Pen? 10. Are there any foods/drinks my child should avoid/or eat that may affect iron absorption? 11. Are there exercises my child should avoid or do? 12. Should we monitor the child’s/adults blood pressure? How often? 13. Are there vitamins such as B-12, Calcium, Vitamin D, etc. that my child should be taking in addition to their therapy? 14. What if the child/spouse/friend wants to have children later on, what are the possibilities of them having a child with DBA? 15. Do you have any reading materials on D.B.A., website, or can you suggest a support group for others in this situation? 16. How often should we set an appointment to see you? 17. Get a second, third, fourth opinion since DBA is so rare!!!!! |
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Questions to ask the doctor
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