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,
Become an advocate for your child. You can make a difference.
Find and cultivate the support system you need. See below for strategy and tips.
Getting treatment for your child with XLH is a step toward managing XLH. But, recognizing that XLH is a lifelong condition can help you think ahead and prepare for the day-to-day challenges of XLH.
Even with treatment, some physical symptoms of XLH can persist and may require additional ways of managing them. For the following physical symptoms, consider these additional strategies:
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 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
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
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:
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.
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:
Continuing support for children transitioning into adulthood can be key to managing progressive symptoms
