special thanks to progenics for making this webinar series possible through an educational grant.
The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in-depth knowledge of your medical history and current situation.
See list of questions and video timing below.
Q1 at 41:42: Daughter is 10 and has SDHB mutation. First abdominal paraganglioma removed when she was 7. How does puberty affect this mutation?
Q2 at 43:42: Would you talk about the MAX gene? My daughter has that mutation and recently had a 10 cm tumor removed from abdomen that was ganglioneuroblastoma. She’s 5.
Q3 47:15: The path to diagnosis for patients is often a long one. For adults there are many differential diagnoses, are these the same for children? What are they?
Q4 at 51:06: Have you ever known a plasma catacholamine test that has been above normal range after 3 tests in over a year to suddenly go down?
Q5 at 53:13: My son is 8 with MEN2a. Normetanephrine numbers are very slowly rising since 2015, is this possibly a precursor to rising metanephrine levels?
Q6 at 54:55: Is treatment with stimulants for ADHD contraindicated with SDHB mutation?
Q7 at 55:50: Do you have physicians on staff who treat adults?
Q8 at 57:00: Can a skull base para be operated on?
Q9 at 58:30: How likely is a reoccurrence with a pheo rating of 4?
Q10 at 1:01:00: As a parent, what have I done to cause this?
Q11 at 1:02:40: Can you discuss the advantages of azedra vs low specific activity MIBG?
Q12 at 1:04:25: Is wait and watch approach more common for kids?