Willow was diagnosed about a year ago but we just received the referal to see a hematologist at Children's Hospital in Pittsburgh, PA. She had a blood test at the local hospital which gave us the diagnosis. I was wondering if anyone could give me information on what may happen at this appt. tomorrow?
The hematolgist will probably just take a detailed history and possibly do more blood tests. Some have labs right in their office and can get instant results. He/she may do a brief physical exam also. Doctor will most likely discuss precautions and how to prevent bleeding, which meds, otc or other substances should be avoided. Some written information may be given to you for reference. Ask any questions that you may have, or write them down so you don't forget. The hematologist may have you come in periodically to check labs and keep track and make sure everything stays in normal range.
They are going to take a family history as well as her history on bleeding and bruising. Exam her and look at the current bruises. I know my hema and my kids hema did their own blood work.
Don’t be surprised if hematologist tests you and her father too. The doc will want to know if either of you have it too or if she has a spontaneous mutation. Also if both parents have it, it changes how she is diagnosed and treated.