image description

Managing Symptoms

 

Current HPP Management

Your doctor can help you manage the symptoms of hypophosphatasia (HPP). But at this time there is no approved treatment for the disease itself.

Managing HPP symptoms

Not everyone with HPP has the same symptoms. Each of the following treatments may be used to manage a different HPP symptom:

Craniosynostosis surgery

  • Sometimes the spaces between the bones in a baby’s skull close earlier than usual. This is called craniosynostosis and it can occur in infants with HPP
  • Surgery is sometimes used to relieve pressure on the brain caused by craniosynostosis and create space for the brain to grow

Dental care beginning at 1 year of age

  • Children and adults with HPP can have problems with their teeth. As a general recommendation for dental care, they should start going to the dentist at 1 year of age and go twice every year. Ask your dentist how often they would like to see you or your child for HPP care.

Internal fixation (also called rodding)

  • People with HPP may have fractures and breaks in their bones. To help their fractures and breaks, a surgeon can insert a metal rod through the middle of a bone to make it more stable

Vitamin B6

  • Some infants with HPP may have seizures. This vitamin, given orally or as an injection by a doctor or nurse, can help to control seizures

Managing pain

Pain from HPP can sometimes be managed with a number of pain relievers and therapies. Only you can know which one best eases your pain. Talk with your doctor before starting these therapies. It’s important to ask any questions you may have about them, including their possible side effects.

NSAIDs

  • Nonsteroidal anti-inflammatory drugs (NSAIDs), such as naproxen, are sold without a prescription

Narcotics

  • These are powerful prescription pain relievers. But they may affect how you function during daily activities. And there is a risk of becoming dependent on these medicines

Heat and ice

  • Warm showers and hot packs may relieve pain or stiffness temporarily. Cold packs or ice packs may reduce pain and inflammation

Exercise therapy and physical therapy

  • A trained professional can teach exercises or provide physical therapy to help build muscles, improve stamina, and relieve pain
  • If you or someone you care for has HPP, ask your doctor if physical therapy may help

Transcutaneous electrical nerve stimulation (TENS)

  • With this treatment, a small electrical device uses electric current to relieve pain for up to several hours. This helps distract you from the pain. A portable version can be worn on a belt

Acupuncture and acupressure

  • Trained professionals use pressure or special needles that are placed gently into the skin. It is believed that the pressure or needles stimulate the nervous system to relieve pain

Massage therapy

  • A massage therapist uses a range of hand movements and pressure on the skin to relax muscles and relieve pain. Special care should be taken not to apply too much pressure on weak bones

Managing pain with mind and body therapies

The therapies below involve the mind as well as the body to reduce pain:

Relaxation training

  • Relaxation training relieves tension and pain by focusing attention on slow, deep breathing. It may take time and practice to achieve results

Biofeedback

  • Biofeedback is a form of relaxation training that uses a special machine that measures heart rate and muscle tension to teach how to relax. In time, results can be achieved without the machine

Visual imagery or distraction

  • Visual imagery focuses on positive mental images such as a beach or sunset to reduce pain. Distraction may be achieved simply by watching TV or a movie

Dietary changes

  • For example, eating fewer foods with calcium, such as milk and cheese, may help manage HPP symptoms. Talk with your doctor about the changes you should make to your diet

Individual or family therapy

  • A mental health professional may help people cope with emotions like anxiety or depression that may happen when living with pain
Managing Symptoms
HPP should not define who you are. No 2 cases are exactly the same. While we can learn from each other’s experiences, it’s truly a personal journey. Deborah Sittig, Founder, Soft Bones

Taking an active role

Your doctor may not be able to answer all of your questions about HPP. You can help your doctor by learning more. One way to do this is by visiting patient community Web sites and rare disease organizations.

top