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Thread: 17 Year Old Daughter

  1. #1
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    Default 17 Year Old Daughter

    Hello,

    I'm Samantha and my daughter, Madison, was diagnosed with GPA last month. She has her first appointment today at the Mayo Clinic in Jacksonville. We're really not certain what lies ahead for us, but I've received a lot of great information from this forum so far -- THANK YOU!!!

    Does anyone have suggestions for questions we should ask today?

    Thanks for any advice you can provide,

    Samantha

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    Default Re: 17 Year Old Daughter

    Sorry so young with this disease....BUT, you are at the right place for help. I use Mayo in PHX, and for 8 years they have taken extremely good care of me. Questions should range from how do we make her more comfortable NOW to what drugs will help her the most first off. Assuming because she's 17, she is in better shape than most of us...and will react accordingly. Mayo's attitude is to knock the disease down with drugs, then achieve remission state and dropping those drugs bit by bit. Prednisone will be the daily drug for a while to knock the disease's symptoms for a while. Then you will be offered a choice of drugs to maintain and get better. Most drugs take a while to react, so have no expectations about feeling better right away...it's a long battle. And ASK any & every question you can, go in with a list, rehearse it so you don't forget (as I do!) & don't relent until questions have been answered. If your Mayo does what mine does, they will answer everything at the time and remain available by phone 24/7. Best to you both.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Default Re: 17 Year Old Daughter

    Welcome to the Forum, Samantha, and I'm glad you found us. Dirty Don has given you an excellent overview of what to expect when working with Mayo. Please keep us posted on how Madison is doing, ask us any questions, and try out the forum's Search function, a way of exploring our archives going back to the beginning, with posts about anything you can think of related to this disease. Some of the info on meds will be a little outdated, as the preferences have changed a bit, but your doc might still prescribe the older and more quickly effective meds, depending on his or her assessment of Madison's individual case. Don is right, prednisone will be a given. Good luck to you both, and we are looking forward to hearing how it goes!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: 17 Year Old Daughter

    Hi Samantha,

    I'd say make sure that they keep her vitamin D levels always high (blood work screening) and lots of calcium to prevent bone damage from steroids medication.
    Best wishes to you and her

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    Default Re: 17 Year Old Daughter

    Dirty Don, Annekat, and seied, thank you for the great information! Knowing this before walking into the appointment yesterday was very helpful. This is exactly the course of action they are going to take with her. I truly appreciate all of the information I've found throughout this forum and I know it will help us throughout the long road ahead of us. Thanks again for all of the information and assistance!
    Last edited by SamanthaFL; 07-26-2019 at 04:04 AM.

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