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I'm searching for more info about my son's condition of DI. I have not found any local support groups (Vic, Australia) and have only found limited info on the internet. What I'm really looking for is PEOPLE who have this condition and live with it on a daily basis. Can you help?? Can you answer any of these qus, or give me some advice on what works best for you? I'm new to i/net support/chat grps and am still learning to navigate my way around, so I haven't yet discovered all there is on this site. * Do you need more DDAVP when awake and active or at night?
I know this is a number of qus (I've got plenty more), but I'm just trying to find out more about this condition. I would love to hear some responses, even if you don't have children with DI, but can give me some guidance if you are living with the 'curse of thirst'. Any help appreciated Thanks heaps,
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3 replies
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Hello. My name is Nikki Ortiz. I was born with diabetes insipidus. I was diagnosed when i was 7. I am 25 now. Heres some tips...
WellI hope this helped alittle. My email is anyone is free to use it. much love.
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Thanks so much for yr reply. My son's desmo needs have increased quite a bit recently, and despite looking for a reason, there is no other explaination other than he is growing. So, we are just judging his desmo requirements by the weight of his nappies and serum sodium levels. Thanks again for yr reply,
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i have di diagnosed 1 1/2 years ago. One of the problems for me is memory loss, and concentration.Drinking lots of water in hot weather or you become dehydrated quickly because you do not realize how much you sweat..Never leave without a beverage available to you.somedays you may need more desmopressin, but if it is too much then you get severe headaches, its tricky and drs sonot understand fully what we go through with this disease.and everyone has similiar and differet reactions to it. I was hospitalized 4 days after diagnosis for too much meds.and the scary thing for me was, drs on call did not know how to treat me,my dr was out of town.If I took the added dosages they wanted, i could have had a more severe reaction
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Looking for more? Check out Ddavp (treatments) Medication (treatments) .