22 Month Old Diagnosed with Nephrogenic Diabetes Insipidus

Wow C., I am so, so sorry for this diagnosis for your daughter. So many of her symptoms make sense now, in hindsight. The chugging of water for instance, is so common. And she has probably been so irritable due to the imbalance of electrolytes.

What types of specialists will you be seeing now? Do you primarily see a Pediatric Nephrologist or a Peds Endocrinologist?

You should ask those departments or MDs about support groups in your area. There is usually a kidney walk every year in most big cities. If you join that group, you are bound to meet families with similar genetics and issues.

Best of luck to you and your family C. as you navigate and learn to manage this condition.

Sorry to hear about the diagnosis, but at least you know what's going on now. Maybe some of the groups in this link will help? Looks like it's a fairly rare disorder, so an on-line support group may be the most realistic option:

http://www.ndif.org/public/pages/45-Where_To_Find_Additio...

Wishing the best for your family!

Try http://www.mdjunction.com/ to find an online support group.

I had a friend in law school with diabetes insipidus. She is a ballerina turned attorney with a very successful career. Since your daughter's father has it, I am sure you know that people can have full lives, but it never hurts to have one more good example, right? I will ask my friend about support groups.