Doctor Discussion Guide for Children
Ben and his mother, living with XLH
Ben and his mother, living with XLH
XLH symptoms can progress over time and it can be difficult to understand how they may be impacting your child’s day-to-day life. The following questionnaire can help you prepare and identify talking points to discuss with the doctor during visits.
Be as honest as you can. There are no right or wrong answers. Complete this questionnaire before each primary care provider and XLH specialist appointment and see how the answers change over time.
*Parents and caregivers, encourage older children to answer the questions themselves if they have the ability to do so. Share this information with your child’s primary care provider (pediatrician) and their XLH specialist (endocrinologist, nephrologist, or other).
DID YOU KNOW?
XLH can affect height, physical function and the ability to do basic everyday activities such as walking, dressing and maintaining personal hygiene. Children with XLH report less engagement in physical activities than their peers.
DID YOU KNOW?
In a survey of children with XLH, 80% were reported to have bone or joint pain/stiffness and 60% reported muscle pain.
DID YOU KNOW?
Nearly 50% of children with XLH were reported to have had surgical interventions to correct bone deformities.
DID YOU KNOW?
About 50% of children with XLH were reported to have had dental abscesses and excessive cavities. Some children can begin to require root canals as well.
DID YOU KNOW?
Research is underway to better understand and treat XLH. Be sure to ask your doctor about the latest advancements in XLH management.
The answers you’ve provided may help guide your discussion on XLH management with your child's doctor.
Please download a PDF of your answers and remember to bring it to the next appointment.