We managed to get a diagnosis when Jack was 6 months but only after we were in hospital for day surgery... I nurse made sure that the doctor took us seriously. They only agreed to take blood while he was out and it snowballed from there. We currently live in a mining town in Australia where it is hot and dry. We are trying to work out where we would move to if Jack can't cope with the climate. Jack's father works at the mines and thankfully which means that we can afford me to stay home with him. At the moment he is using a feeding machine and my day starts at 4am and finishes at 10pm. I am hoping to find some parents and patients with this type of DI and try to make Jack as comfortable as possible so that he can flourish like any other child.

The official name is "Desmopressin Acetate Oral Disintegrating Tablets"made by Ferring and they are taken sublingually. According to my daughter, they have no taste. Is there DDAVP tablets that you take by mouth??????

I have not heard of melts either. If they taste great and work I am in!!!

Hi everyone,
My eight year old daughter was diagnosed in July 2007 with DI. She is well controlled with DDAVP melts. We've just undergone her second MRI and so far we think it is just idiopathic. At the moment there is slight concern about her Growth Hormone levels so we are in the process of having some repeat testing done there. We live in Ontario,Canada and would love to talk with other people who can shed some insight to what living with DI is really like, perhaps recommend some resources... At this point we are still compiling our list of questions for her next doctor's appointment. So little is known about this disease. It seems like EVERYBODY has heard of Diabetes Mellitis or knows someone with it...We know absolutely nobody with DI.. I've been trying to find a local support group but I'm having difficulty even finding that! The post about water obsession really struck a cord with me and made me chuckle.. Something only those of us dealing with DI could appreciate!! Thanks a lot for the camaraderie .. My name is Linda.

24 year old female. Diagnosed with DI at 17. Finally trying to connect with others who understand what I am going through and can provide insight to things that I don't always understand my self.