Medical appointments can feel rushed, especially when your child has several symptoms, medicines, test results or specialists involved. You do not need to understand every medical term beforehand. Your job is simply to bring the important information, explain what you have noticed, ask your questions, and make sure you understand what happens next.
Before the appointment
Know the main reason for the visit and the 2 to 3 most important things to discuss
Write down each symptom: when it started, how often it happens, and whether it is getting better or worse
Note whether it affects eating, sleeping, walking, playing or school
Bring previous test results, genetic reports, specialist letters and health or growth records
If your child has a genetic diagnosis, bring the actual laboratory report, not only the name of the condition
Make a medicine list
Write down every medicine your child takes, including prescription and non-prescription medicines, vitamins, supplements and herbal remedies. For each one, note the name, the dose, how often it is taken and why. Photos of the packets also help. An up-to-date list helps clinicians check doses, interactions, allergies and treatment changes.
If a genetic disorder is being investigated
Share what you know and say when you are unsure. You do not need your entire family history.
Does anyone else in the family have the same condition, or similar unexplained symptoms?
Are any relatives known carriers, or have any had genetic testing?
Are the parents biologically related?
Have there been unexplained deaths of babies or children, or repeated pregnancy losses?
During the appointment
Start with your main concern, and be specific about changes. Instead of “He has been unwell for a while”, try “He started coughing around six weeks ago. It happens every day, and he has had two chest infections since then.”
Before you leave
Are any tests needed, and where and when will they happen?
How will we receive results, and who do we contact if they do not arrive?
Is another appointment or specialist needed?
For a new medicine: the dose and timing, what to do if a dose is missed, and important side effects
What should improve, how long it may take, and which symptoms need urgent help
After the appointment
Write down anything important while you still remember it
Update the medicine list and keep new reports together
Note the next appointment and complete any tests or referrals
Contact the clinic if expected results do not arrive
Practical guidance
Appointment details, main concerns and questions written down
Medicine list and allergies
Previous reports, test results and genetic reports, if relevant
Family history information, if relevant
A phone or notebook, and a trusted person if you would like support
Key takeaways
Prepare the important information before the appointment
Ask questions whenever something is unclear
Confirm what happens next before you leave
Related resources
Caring for Your ChildPDF
Caregiver Learning Booklet
A guide to the four inherited conditions covered on Shared Blood: what each one is, the signs to look for, and how to support your child at home and at school.