Doctor Discussion Guide for Children

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).

Question 1

Since their last appointment, has your child expressed disinterest in or avoidance of social or school activities due to:

Feeling tired or a lack of energy?

Difficulty moving?

Experiencing teasing for being short or for their physical appearance?


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.

Question 2

Since their last appointment, how often has your child complained of pain?

Where has your child experienced pain? Check all that apply or click the locations on the image of the body. (optional)


In a survey of children with XLH, 80% were reported to have bone or joint pain/stiffness and 60% reported muscle pain.

Question 3

Since their last appointment, has your child needed assistance to move due to pain or corrective surgeries?

Please describe. (optional)


Nearly 50% of children with XLH were reported to have had surgical interventions to correct bone deformities.

Question 4

Since their last appointment, has your child had any dental complications?

How often have you had to take your child to the dentist? (required)

Describe the type of dental complications. (optional)


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.

Question 5

How recently have you discussed options for managing your child's XLH with the doctor?

Describe how your child's XLH is managed on a daily basis and any concerns you may have about XLH management. (optional)

List any additional questions or notes to discuss with your child's doctor at their next appointment. (optional)


Research is underway to better understand and treat XLH. Be sure to ask your doctor about the latest advancements in XLH management.

Thank you for completing this questionnaire.

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.