What you notice at home
What you see day to day, without treating it as a diagnosis.
Printable tools — not treatment
Family Care Toolkit
Forms that help you organize what happens at home and what is written in medical reports — before a clinic visit, school meeting, or emergency. Personal fields are blank for your family to complete.
What is in the medical record
What a clinician or treating team has written in the file.
What the doctor decides
Dose, testing, and procedures are decided only by the qualified team.
Choose a tool by situation
Going to emergency
Emergency card
A quick summary of information an emergency team may need when the clinician who knows the child is not there.
When might you need this tool?
- When going to the emergency department for severe vomiting or diarrhea, dizziness, or fainting.
- After a fall or injury that needs medical assessment.
- When a new emergency doctor needs the diagnosis, medicines, and usual baseline lab values quickly.
I have a new doctor visit
Summary for a new doctor
One page that helps a clinician seeing the condition for the first time understand the essentials without searching many files.
When might you need this tool?
- The first visit to a new doctor or hospital.
- When referred to a new specialty.
- When moving from one hospital to another.
I have a follow-up visit
Follow-up visit checklist
Helps the family remember what has changed since the last visit and what to discuss with the doctor.
When might you need this tool?
- Before a nephrology or routine follow-up appointment.
- When there are several symptoms or notes the family worries they might forget during the visit.
- When comparing today's results with the previous visit and recording the doctor's decision and next appointment.
I want to keep the patient record
Portable medical record
A short record the family keeps so the most important medical information stays with them even when the hospital or doctor changes.
When might you need this tool?
- When moving to a new hospital.
- When labs and reports are spread across more than one facility.
- When the family wants to show how results and medicines have changed across several visits.
I track labs and imaging
Labs and imaging log
One place to record labs and imaging already done, and what the doctor asked to follow later.
When might you need this tool?
- After a blood or urine test.
- When the doctor schedules future follow-up imaging.
- When a new symptom appears and the doctor requests an extra test or scan.
The child refuses medicine
Medication acceptance notes
Helps the family describe what actually happens when medicine is given, instead of only saying “the child refuses medicine.”
When might you need this tool?
- If the child spits out part of the dose.
- If every dose takes a long time or a lot of negotiation.
- If there is nausea, taste refusal, or uncertainty about how much was swallowed.
I track appetite and meals
Appetite and meal notes
To record appetite changes, how meals go, and what the family notices. This is an observation tool, not a diet plan.
When might you need this tool?
- When appetite is lower than usual.
- If the child eats very slowly or much less.
- When the family wants to see whether the problem is ongoing or changes day to day.
I follow bone and movement safety
Bone and movement safety
Helps the family and doctor set clear activity limits, instead of choosing between a total ban and activity with no precautions.
When might you need this tool?
- After a fracture or fall.
- Before starting a sport or a new activity.
- If school or a family member is unsure what the child can join safely.
School needs to understand the condition
School guide
A sheet that helps school staff understand the child's day-to-day needs without turning the school into a medical service.
When might you need this tool?
- When starting a new school or class.
- Before a sports activity or school trip.
- If medicine is needed during school hours, appointments are frequent, or a teacher notices fatigue or anxiety that needs family contact.
I want to organize psychological notes
Psychological and behavioral form
Organizes family notes so a professional can understand behavior without assuming one cause in advance. This form does not diagnose a mental health condition.
When might you need this tool?
- If the child has become very afraid of hospital or medical procedures.
- If attachment to parents or fear of new people and places has increased.
- If the family is unsure whether what they see relates to the illness, medical experiences, development, or other factors.
I want to reflect on family balance
Family balance
Space for the family to review how illness affects daily parenting and parental exhaustion.
When might you need this tool?
- If the family feels they are stopping the child from many things out of fear.
- If rewards or negotiation have become part of most daily tasks.
- If a parent feels exhausted or struggles to balance protection and independence.
I am planning a future pregnancy
Genetic counseling and pregnancy planning
Helps the family prepare for a genetics appointment and gather important questions and reports before or while planning a pregnancy.
When might you need this tool?
- When planning a new pregnancy.
- When wanting to understand inheritance and the chance of recurrence.
- Before a genetics clinic visit to discuss available tests and options.
I have advice from more than one specialty
Questions to coordinate between doctors
Helps the family carry a question from one doctor to another when the decision involves more than one specialty.
When might you need this tool?
- If an orthopedic doctor makes a recommendation and wants nephrology input before acting on it.
- If one specialty asks for a medicine or procedure and the family needs to check fit with the rest of the plan.
- When a doctor says: please check with the other specialty first.