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Mom of a 17 yr old living with DI

Posted , 3 users are following.

april40349
april40349

My 17 year old son was diagnosed with central Di last June 2016 along with adrenal insufficiency, thyroid disease and low testosterone. All of this stemmed from malignant tumors called multiple Germinoma (brain cancer) which damaged the pituitary gland. We have already been through chemo and proton radiation. Thankfully the cancer is gone and we go every 3 months for MRI's...that my son has to be put to sleep for because now he experiences anxiety and having claustrophobia.

We are currently at Mass General Hospital in Boston where he was admitted 2 days ago because of his creatinine (Kidney) levels being high. Apparently they believe the chemo drug carboplatinum and previous use of some Motrin, and antibiotics (had wisdom teeth out last week)has damaged his kidneys. Noone told us to stay away from these meds. His Di is out of control and has been for some time. We knew he peed alot and drank alot even while taking his ddavp and living with this. I had voiced concerns to his endocrinologist that he has some good days and some awful days. Now that we are in hospital and speaking with all different teams. IF HIS DI IS CONTROLLED HE SHOULDN'T BE PEEING EVERY HOUR OR MORE AND GETTING UP IN THE MIDDLE OF THE NIGHT SEVERAL TIMES!!!! I am beyond frustrated right now!!

Right now they have him taking him double his ddavp dose but yet he was up and peed 3 x last night. We are in one of the best hospitals in the world and they are still baffled!! I just want my son to have a normal life. Any feedback would be much appreciated

0 likes, 3 replies

3 Replies

  • MtViewCatherine
    MtViewCatherine april40349

    Posted

    I went through hell with my mom when she became severely diabetic due to a medication she was on. I put her on a strict diet, with acupuncture and a few herbs and have been able to reverse the severe diabetes. However, she keeps getting recurring bladder infections, without pain, which I think are really kidney infection.  From what I've read, and seem, kidney problems don't always show with elevated creatinine.

  • gill21655
    gill21655 april40349

    Posted

    Oh April... You are all going through so much. I can only add my thoughts are with you.

    And like you say it's one of the best hospitals in the world... It's encouraging that you have this.

    Stay strong and positive 

    xxx

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