Preparing for Your Doctor’s Visit
At an appointment with a health care provider, it’s not unusual to be overwhelmed with concern, fear, and anxiety. Caregivers are often unable to recall much of what the doctor said. While this is normal, it remains important to understand the specifics of your child’s diagnosis. Keep these tips in mind:
- Don’t be afraid to ask questions to find out about the needs of your child. Bring a list of questions with you.
- Take another family member or support person with you.
- Take time to digest the information given to you.
- If you need translation, interpretation or other communication support, make this known when arranging the child neurology appointment so appropriate arrangements can be made.
- Ask for any written information about the diagnosis (including medical details). Read this when you get home.
- Arrange for a next appointment with the child neurologist. This will give you an opportunity to ask further questions once you have had time to digest the information.
- Ask the practitioner to explain information to other family members so that you can discuss it further at home.
- Ask for information on other services that can help you deal with how the diagnosis is going to affect your child and your day-to-day lives.
- Bring photos or videos of your child’s symptoms.
Child Neurologist New Visit Toolkit
We encourage you to fill out the Child Neurologist New Visit Toolkit prior to your first visit with a neurologist or when visiting a new neurologist. Download the form, print it out and bring it to the visit with you. Keep an electronic or paper copy for yourself, as well. It will be a valuable resource to track your child’s journey and ensure the best quality of care.
This toolkit was made possible thanks to the generous support of Neurogene, Biomarin, Genome Medical, Greenwich Biosciences, Illumina, Mallinckrodt Pharmaceuticals, Ptc Therapeutics, Stoke Therapeutics, Taysha Gene Therapies, Regenxbio, Ucb, Ultragenyx Pharmaceutical, Zogenix, TSC Alliance, SynGap Research Fund, and Neurabilities Healthcare.