Actually she saw us on her lunch break and she didn't charge us a cent. It was actually really incredible. I can't believe that she did that for us. I'm still I'm awe. She spent an hour of her time with us ($350 worth) and didn't charge us a penny.
She felt like an old friend and even wanted to meet the kids. I think mostly because she is an endocrinologist and she wanted to see them from a doctors perspective but I was happy to Oblige.
We talked to her about Savannah's history and she gave us some options. She said there is a marker on some gene that is a mutation only found if they are liking for it specifically.... That could possibly be in Savannah's case. She did not dispute a diagnosis of PWS, nor did she concur, but she said she had many of the behaviors that pertain to it and so she could possibly be a rare form of the PWS.
She referred us to a clinic in Seattle that is doing gene mapping of sorts and that we should all get blood work (Doug me and savannah) and see what comes up. I can tell you this much right now that I HAVE the PWS trait, and I don't even deny it! I know this isn't something to be funny about which is why I'm not being funny.... Savannah gets it somewhere!!!!
She also said there is a drug to help with picking and sleep regulation and hopefully someday a medication to help with the hunger. It is currently being trailed in adults. Happy day! However I'm not so sure I want to drug savannah with a million meds.... Maybe that's bad. Maybe I'm being ignorant and maybe neglectful.... But she is already in some big drugs, I hate to pump her with more :(.
Overall the visit went well and we walked away very pleased with the outcome.
No comments:
Post a Comment