Support for children with XLH

Living with a chronic condition can be challenging, but that doesn’t mean your child can’t live a fulfilling life.

By having a lot of information about XLH and staying informed, you can gain a better understanding of how to manage the condition.

Ruby, living with XLH

Advocate for your child with XLH

Become an advocate for your child. You can make a difference.

Develop a support system for X-linked hypophosphatemia

Find and cultivate the support system you need. See below for strategy and tips.

Finding the right management options and recognizing that XLH is a lifelong condition can help your child with XLH think ahead and prepare for the day-to-day challenges of XLH.


Additional ways to manage the physical symptoms of XLH

Even with management, some physical symptoms of XLH can persist and may require additional support. For the following physical symptoms, consider these additional strategies:

Pain from rickets and osteomalacia

Children with XLH are affected with rickets and osteomalacia. Because of these conditions, they may experience bone and joint pain.

  • Ask your doctor about the use of pain medications as part of your child’s regular pain relief

  • Consider physical therapy, which may help relieve pain by improving the stability of joints and help strengthen the muscles

  • In addition to physical therapy, occupational therapy can be helpful in providing children with new ways of managing everyday tasks and helping them perform their day-to-day activities

Tooth abscesses

Tooth abscesses or tooth infections may appear without any cavities or any hints of trauma, which is why they are called “spontaneous abscesses.” These abscesses may manifest as pain in the tooth or gum area. They may be accompanied by swelling.

  • Inform your dentist about your child’s condition

  • To help ensure that these infections do not become serious, set up regular dental check-ups

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

Difficulty hearing

Tiny bones in the ears—just like the rest of the bones in the body—can be affected in children and adults with XLH and may lead to hearing problems. While hearing problems in XLH are more common in adults, they can also affect children.

  • Ask your child if they experience any difficulties with hearing such as ringing in the ears. These may also be accompanied by dizziness (vertigo)

  • If your child has any of these symptoms, make an appointment and seek the help of your doctor

Ruby, living with XLH

X-linked hypophosphatemia strategies for school-age children

Going to school and interacting with peers is an important part of childhood. Children with XLH may face difficulties at school because of their outward appearance. As a parent, you are your child’s greatest advocate and you play an important role in shaping these experiences. Consider the following strategies if you think your child is experiencing difficulties at school:

  • Adopt a mindset of openness and be willing to actively listen
  • Empower your child to have a voice by encouraging an open dialogue about their school experiences, which can help you understand what they are going through
  • Know the school’s 504 plan and have an open discussion with the school counselors, staff, and teachers to help inform and educate them about XLH and the challenges of the condition. Counselors and teaching staff may be able to provide support, help encourage participation and interaction, and prevent bullying

Resources for young students and teachers

See resources for school-age children

Children with XLH may have low self-esteem due to their physical appearance, such as leg bowing or short stature. These symptoms may affect their ability to interact with their peers and participate in sports or other activities.

  • Encourage open and regular conversations with your child
  • Acknowledge their feelings of being different
  • Reinforce that everyone is different in many ways—beyond their physical appearance—and that being different is what makes people unique and interesting
  • Counseling and seeking professional support may also help ensure the emotional well-being of your child
  • Connect with the XLH community. This can help you find families and people with similar experiences who may be able to offer additional support

Emotional wellness strategies for children with X-linked hypophosphatemia

Strategies for transitioning X-linked hypophosphatemia care into adulthood

One of the most fulfilling moments of being a parent is seeing your child grow into an independent young adult. As your child grows up, the responsibility of care is transferred from you to your child. Equipping them with the skills that allow them to be able to take care of themselves is one of the ways to prepare your child for their future. To help your child with the transition of care, consider the following:

  • Involve your child with their care as early as possible
  • Educating early about XLH and the importance of management is a way to build knowledge and confidence
  • Remember XLH is a progressive condition. Starting XLH management early may have a positive impact on your child’s long-term health
  • Encourage your child to ask questions during your visit to the doctor. This will help your child get used to interacting with doctors and hospital staff
  • Ask your child to keep a diary to keep track of the information they receive. This will help your child become organized and remember important information
  • Make it fun! Empower your child and incentivize participation

XLH Transitions Toolkit: Resources for Transitioning to Adulthood

Explore the XLH Transitions Toolkit

Continuing support for children transitioning into adulthood can be key to managing progressive symptoms

Learn how to support adults