Adolescent who may have Cushing's

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My 11 y/o daughter has had significant weight gain over the past three years. She has the moon face & large abdomen along with other signs and symptoms. Her cardiologist recently referred her to an endocrinologist who ordered a series of test to check her for Cushing's. We did 24 hr urine test at home that showed high level of Cortisol. We were hospitalized for two days last week for more lab work , another 24 hour urine, dexamethasone suppression test and MRI. Her MRI was abnormal. She has a microadenoma on her pituitary about 4mm. We have a f/u appointment with endocrinologist next week to discuss her tx plan as the team are waiting for all lab results. I was wondering is anyone else in group the parent of a child who has been diagnosed with Cushing's?

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  • Posted

    I am not a mom, but my heart goes out to you and your daughter. I know how difficult cushings can be.

    My only advice is to get a very good surgeon

    with lots of experience with pituitary tumors.

    Less complications that way

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    • Posted

      Thanks for the advice. The NP & MD in the Endocrinology Dept at Children's Hospital have been wonderful and have a lot of experience. I pray whatever Neurosurgeon we are we referred is just as experienced.

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  • Posted

    I am so sorry to hear about your daughter's possible Cushing's. I do not have a child with this disease. I did have pituitary Cushing's Disease and my tumor was 5mm.

    Your daughter is so young to be so sick....and that does break my heart....but thank God she has you to advocate for her. I also am so glad that her weight gain and other symptoms are being investigated thoroughly.

    Yes, make sure all her doctors are experienced with this disease as it is more complicated then imagined.

    I wish you and your family a successful journey through this all.

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    • Posted

      Thanks! One thing about my baby girl, she's a fighter! She's had three heart surgeries, one eye surgery and now this. She has a beautiful personality and hardly ever complains of anything. The hardest part throughout all of this is her being teased at school because of her appearance. Some kids can be so cruel. Hopefully, once her diagnosis is confirmed, things can begin to turn around for her.

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  • Posted

    Check out a site on Facebook called Cushing's Recovery - Don't Stop Believing.  There are two new parents to the group of kids just diagnosed and many others that have been through it with their child. One is your daughters age. You will need to sign up to join - it's free!  You can never have enough information.  I have relied on this site and a few others to help me get through this disease.  Good luck!

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