Managing
XLH

Pain from rickets and osteomalacia

Consider physical therapy, which may help relieve pain by promoting the stability of joints and helping to strengthen the muscles.

Dental health

• Inform the dentist about your child’s condition.
• To help ensure that these dental issues do not become serious, set up regular dental check-ups.

You can also help by encouraging your child to brush and floss regularly, and avoid sugary snacks.

• Remember that your child may face challenges at school because of how XLH affects them.
• Encourage your child to speak openly about their school experiences so you can better understand what they are going through.
• Actively listen to your child with an open mind. You play an important role in shaping their experience with XLH.

Become familiar with your school’s individual education plan (IEP) and talk to school counsellors, staff, and teachers to help them understand XLH. Counsellors and teaching staff may be able to provide learning support, encourage participation, and prevent bullying of your child.

• Consider how hard it may be for your child to talk about XLH.
• Acknowledge their feelings about XLH.
• Seek out counselling and professional support to help your child’s emotional well-being.

Connect with the XLH community to help you find families and people with similar experiences who may offer additional support.

• Prioritize helping your child understand more about XLH and its management requirements as they transition into adulthood. This includes tracking progression.
• Teach them to take part in their care as early as possible so they’ll be more informed and empowered to take care of themselves.
• Encourage your child to ask questions during doctor visits to help them get used to interacting with doctors and hospital staff.
• Ask your child to keep a diary of what the doctor tells them. It’s a great way for them to learn about organization and remember important information.

Make it fun! Give your child rewards for taking part in their learning.

• Transition your child’s care as early as age 12. The goal is to make the change to adult healthcare some time between age 18 and their early 20s.
• Treat the transition as a team effort between adolescent child, yourself, pediatric specialists, and adult healthcare providers.
• Find the right adult healthcare provider, but don’t forget that it is important for adolescents to be aware of changes in the healthcare system, laws, insurance, and self care.
• Be sure adolescents understand how the symptoms of XLH may change over time.

Teach adolescents to effectively communicate with healthcare providers and make medical appointments.

• Teach adolescents to share their story to help them gain confidence in educating others about XLH and communicating their needs.
• Encourage adolescents to connect with the XLH community to help them find peers with similar experiences who may offer additional support.
• Guide adolescents to find a stress-reducing activity they enjoy and make it part of their regular routine.

Help adolescents find coping techniques like deep breathing or journaling to help manage stress or anxiety. This can be done with the help of a therapist.

• Ensure that adolescents who are interested and able to pursue further education research the support that’s available to them and what they need to do to access it.
• Advise adolescents to locate the disabilities office, identify themselves, request accommodations, and provide any required documentation ahead of time.

Remind adolescents that they will be juggling class and personal schedules, and that it’s important to stay on track with their disease management plan.