Manage: Health Tips

The information provided in this section is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

Suggested First Steps

Health Tips

You are here (read below)

Therapies

Tools & Equipment

Behavior Management

“Ignore the Behaviors, not the individual”

Your medical team

A team of medical professionals from a variety of areas will be necessary to oversee care.

  • Neurologist

  • Nephrologist

  • Geneticist

  • Orthopedic Team

  • Orthopedic Surgeon

  • Physiatrist

Common treatments

  • Hyperuricemia: Allopurinol or Febuxostat is frequently used to reduced the risk of nephropathy, gouty arthritis, and tophi. Sodium Citrate is used for Urine PH Balance.

  • Neurodevelopmental: Muscle relaxants (limited effectiveness), benzodiazepines.  (caution when using together)

  • Behavioral problems: Physical protective devices (self-protective devices) and dental extraction to avoid mount and hand mutilation.  Selective Ignoring/Redirection.

  • Existing treatments for the neurologic and behavioral problems are only partly successful.  Levodopa has not been demonstrated to be useful as treatment.  Deep brain stimulation is under investigation and has significant variability in response between individuals.

  • Avoid:

    • Dehydration

    • Probenecid (increase renal excretion of uric acid)

    • Methotrexate

    • Neuroleptics (dopamine receptor antagonists)

Medicaid Coverage

Commonly known as the Katie Beckett waiver, numerous states across the United States offer Medicaid waivers designed for children under 19 years old with complex medical conditions or enduring disabilities. These waivers enable such children to qualify for Medicaid, facilitating their care in a home environment. Notably, eligibility is determined based on the child's own income and resources, independent of their parents' financial situation.

This website serves as an extensive guide to all the available medical waivers, organized by state for easy navigation. Explore 'Kids' Waivers' sorted by each state.  Kids' Waivers | By State

If your child has recently been diagnosed with Lesch-Nyhan, it's important to understand the signs and symptoms associated with the condition. This information can help you better understand the individual’s needs and advocate for appropriate care.

Children and adults with Lesch-Nyhan may experience a variety of symptoms, including self-injurious behavior, neurological problems, motor difficulties, kidney stones, and gout. However, it's important to remember that each individual's experience with the condition will be unique.

If you have any questions or concerns about your child's or adult’s symptoms, please talk to your doctor. They can help you understand the individual’s specific needs and provide appropriate care.