Health Tips
Caring for someone with Lesch-Nyhan Syndrome means paying attention to both everyday needs and long-term health. From managing uric acid levels to supporting mobility, nutrition, and overall well-being, small daily steps can make a big difference.
This page offers practical, family-focused tips to help caregivers support physical health, prevent complications, and improve quality of life. Our goal is to provide clear guidance, helpful tools, and encouragement for families navigating the unique challenges of Lesch-Nyhan Syndrome.
Suggested First Steps
Health Tips
You are here (read below)
Therapies
Tools & Equipment
Behavior Management
Teeth Removal
“Ignore the Behaviors, not the individual”
Living with Lesch-Nyhan syndrome (LND) brings both challenges and moments of deep resilience. Families often face medical, behavioral, and daily care needs that require patience, creativity, and teamwork. While no two individuals experience LND in the same way, understanding the most common health concerns can help you prepare, find support, and feel less alone on this journey.
At Love Never Sinks, we believe that knowledge brings comfort and connection. Our goal is to share reliable information and hopeful guidance so families can navigate care with confidence and compassion.
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.
Movement and Muscle Challenges
These are some of the most noticeable and challenging aspects:
Muscle stiffness and spasticity – tight or rigid muscles that make movement difficult.
Dystonia – involuntary twisting or repetitive muscle contractions.
Chorea or writhing movements – sudden, jerky, or flowing movements.
Poor coordination and balance – difficulty walking or controlling movement; many individuals use wheelchairs.
Speech difficulties (dysarthria) – slow or slurred speech due to muscle control problems.
Feeding and swallowing difficulties – can lead to poor nutrition or risk of choking.
Uric Acid and Kidney Health
Risk of kidney or bladder stones, which can be painful
Possible kidney damage if uric acid levels are not managed
Gout (painful joint swelling) can occur in some cases
Daily Life and Support Needs
Dental and skin care due to self-injury
Assistance with feeding, communication, and mobility
Sleep difficulties or fatigue from muscle issues
Behavioral and Emotional Challenges
Self-injury, like biting or hitting, which is part of the condition and not intentional
Compulsive or repetitive behaviors
Emotional distress from frustration or awareness of self-injury
Support and Management
People with LND often benefit from a team of specialists, including doctors, therapists, and behavioral experts, as well as assistive devices and home adaptations. Medications can help manage uric acid and prevent complications.
Your Medical team
Managing Lesch-Nyhan syndrome (LND) begins with having the right medical team in place. Early connection with healthcare providers helps ensure your child receives consistent, proactive care throughout their life.
Key Specialists to Consider:
Primary physician: Oversees your child’s care and coordinates all specialists.
Nephrologist: Monitors kidney function and helps manage uric acid levels with medication if needed.
Neurologist: Supports movement challenges, medication management, and overall care planning.
Geneticist: Confirms the diagnosis, explains how Lesch-Nyhan occurs, and helps families understand the genetic aspects of the condition.
Orthopedic Team: Supports bone, joint, and muscle health to improve comfort, posture, and mobility.
Orthopedic Surgeon: Performs surgeries if needed to correct bone or joint issues and improve movement or comfort.
Physiatrist: Helps manage muscle tone, movement, and therapy plans to enhance daily function and quality of life.
Early Intervention Matters
Early Intervention programs provide therapies and support for children from birth to age 3. These services can make a meaningful difference in development and quality of life.
👉 Find Your State’s Program
Financial and Home Support
Families may qualify for Medicaid Waivers (also known as Katie Beckett Waivers) that allow children with medical or developmental needs to receive care at home. Only the child’s income is considered when determining eligibility.
👉Home - Kids' Waivers
At Love Never Sinks, we know that building the right care team early on can make a lasting difference. We’re here to connect families with the information, specialists, and support that help children grow, learn, and live with comfort and dignity.
Hyperuricemia: (High Uric Acid) 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.
Common treatments
Dehydration
Probenecid (increase renal excretion of uric acid)
Methotrexate
Neuroleptics (dopamine receptor antagonists)
Avoid:
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.