Support for children with XLH

Ben, living with XLH

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Living with a chronic disease 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 disease.

Become an advocate for XLH

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

Find and cultivate an XLH support system

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

—Melissa, XLH patient and parent

Getting treatment for your child with XLH is a step toward managing XLH. But, recognizing that XLH is a lifelong disease can help you think ahead and prepare for the day-to-day challenges of XLH.

 

Additional ways to manage the physical symptoms of XLH

Sometimes, even with treatment, some of the physical symptoms of XLH can continue to manifest and may require additional ways of managing them. For the following physical symptoms, consider these additional strategies:

Pain from
rickets and
osteomalacia
Tooth
abscesses
Difficulties
with hearing

Pain

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 help 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

Difficulties with 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

Strategies for school-age children with XLH

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 his or her 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 challenges of the disease. Counselors and teaching staff may be able to provide support, help encourage participation and interaction, and prevent bullying

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 his or her feelings of being different
  • Reinforce that everyone is different 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

Strategies for emotional wellness for children with XLH

Helping young adults with XLH transition in care

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 his or her care as early as possible
  • Educating early about XLH and the importance of treatment is a way to build knowledge and confidence
  • Remember XLH is a progressive disease. 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