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Nephrogenic diabetes insipidus?

post #1 of 5
Thread Starter 

Today we were told that my 11.5 year old son likely has nephrogenic diabetes insipidus.  We go for tests tomorrow to confirm.  He has been on lithium (for bipolar disorder) for 4 years and if he does have it the lithium is what caused it.  I am feeling so scared and guilty (bc we chose to put him on meds even though I know he needed them).  The dr said the damage may be permanent.  He will have to go off the lithium and try and restabilize on another med which is terrifying for me.  He has done so well on the lithium and I can't even begin to think about going back to how things were when he was unstable.

 

Regardless of how it was caused has anyone else dealt with diabetes insipidus?  The dr has me kind of scared, telling me how dangerous it will be if he ever got dehydrated and how he's at risk for some big long word I can't remember, basically electrolyte imbalance.  And if it is permanent does that mean he'll be suffering incontinence (100% of the time at night, urinary leaking during the day) for the rest of his life?  The poor kid has been through so much, I can't believe there is yet another problem.  I just want his life to be easy, not deal with all of this. :(

post #2 of 5

I am so sorry mama. I don't have advice. Your poor son and you to have to go through all of this.

post #3 of 5
Thread Starter 

We got word today that the diagnosis is confirmed.  He definitely has nephrogenic diabetes insipidus.  We have a long road ahead of us for many reasons. :(

post #4 of 5
I'm so sorry. I've been following your posts for years and I really feel for your son. He has been through so much already.

I'll be keeping him and your entire family in my thoughts.
post #5 of 5

I too have been following your son's story. I am sorry this has happened to him.

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