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Anyone here have experience? My DS2 was just diagnosed. MRI showed no tumor but a "thickening of the pituitary stalk." It's apparently surprising enough for the neurologist to write it up for a conference.
Desmopressin has alleviated the symptoms but they still need to figure out the cause. He's scheduled for a repeat MRI in 60 days and a visit to an endocrinologist.
He keeps saying "don't worry Mom," which is, of course, ridiculous, he's my kid.
He's also experiencing headaches, minor, helped with ibuprofen, but he's not a headache guy.
Any information will be appreciated.

Since he is responding to desmopressin he most likely has central DI. My quick research shows the cause about equally likely to be a tumor or idiopathic, which just means “we don’t know what caused it.”

I’ve known a couple of people with DI and they have done well as long as they drink enough and stay on the desmopressin. I know as a mom, no matter how old our kids are we still worry.

I’ll be praying for him and for you. ❤️

Thanks for that definition of idiopathic! I suspect that's what we'll be eventually told. The MRI was normal except for that thickening, hopefully that is a stable finding and won't change.

He was a bed wetter for a LONG time as a child, (normal in our family although more persistent) slept the sleep of the dead. He was 12 before he completely grew out of it. He also had to pee frequently, we carried an empty peanut butter jar everywhere when he was young. My gut says the issues are related but obviously I'm not a doctor.

Appreciate the prayers!