NDIAG • Education • Advocacy • Support
Newly Diagnosed: What’s Next?
A practical starting point for families learning how to live with NDI/AVPR.
You do not have to learn everything in one night. Start with the basics, build your medical team, and create systems that make daily life safer.
Your first checklist
- ☐ Ask which type of DI/NDI you have and whether a genetic cause is suspected.
- ☐ Ask whether AVPR2 or AQP2 testing is appropriate.
- ☐ Ask who should manage the condition—nephrology, endocrinology, or both.
- ☐ Get a written medication and hydration plan.
- ☐ Ask what your provider wants you to do if vomiting, diarrhea, fever, or reduced drinking occurs.
- ☐ Ask how sodium/electrolytes will be monitored.
- ☐ Learn your child's or your usual urine output, thirst, weight, sodium, and other baseline markers as directed by your team.
- ☐ Ask about nutrition and whether a low-sodium/low-solute plan is appropriate.
- ☐ Learn to read nutrition labels.
- ☐ Build an emergency kit and medical-alert plan.
- ☐ Set up your phone's Medical ID.
- ☐ Ask about a school 504 plan if needed.
- ☐ Tell caregivers, daycare, and school about unrestricted water and bathroom needs.
- ☐ Join a reputable NDI community.
- ☐ Keep copies of genetic results, medication lists, emergency instructions, and specialist contacts.
Questions to ask your provider
Diagnosis
- What type of DI do I/my child have?
- Could this be hereditary?
- Should we test AVPR2 and AQP2?
- What other conditions need to be ruled out?
Daily management
- What is our individualized fluid plan?
- What medications are being used and why?
- What sodium or lab changes should prompt a call?
- What are our illness instructions?
Build your support system
Rare disease care can feel lonely. Connect with NDI families, ask your specialist about dietitian and social-work support when appropriate, and save reliable sources rather than relying on random internet posts.
School and accommodations
If the diagnosis affects school access, start a conversation about a 504 Plan. NDIAG's School & 504 page provides a parent-friendly list of accommodations to discuss with your school team.
You don't have to become an expert overnight.
Learn one piece at a time. Ask questions. Keep your medical team's instructions in writing. And remember that your individualized plan matters more than any generic website checklist.