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DI "cured"

PostPosted: Wed Oct 05, 2016 10:47 am
by heather
Hi, my daughter, Hannah, is 29 years old and has had pan-hypopituitarism since birth, with her DI always having been very difficult to control. She has profound learning disabilities and is non-verbal, so is unable to say how she is feeling; she also has epilepsy.
From infancy, her dose of DDAVP was always very difficult to manage, partly due to the interactions of the various anti epilepsy drugs (AEDs) that she has taken over the years (her epilepsy has also been difficult to control). The only way we were able to assess her need for DDAVP was my monitoring her fluid balance together with the specific gravity of her urine; her dose and frequency of DDAVP could vary from day to day.
About 3 years ago, we realised that she was needing less and less DDAVP, until eventually she stopped taking it altogether. Initially we thought that this was due to the introduction of a new AED, but when this medication was later stopped, she still had no need for any DDAVP and has not taken it since.
Does anyone know of any other instances when, after over 25 years, congenital DI has suddenly been "cured".

Re: DI "cured"

PostPosted: Wed Oct 05, 2016 11:17 am
by Carl
Short answer to your specific question for me is "no", not after 25 years of having DI.

I was diagnosed with "transient" DI - which occurred after I had an operation to remove a pituitary tumour. I had DI for 3 months or so and weaned myself off the Desmopressin tablets and thankfully DI never came back again.

But of course 3 months is very different to 25 years. Let's hope that DI stays gone though, that has to be good news!