Tools and Equipment

Please note: 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

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Tools & Equipment

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Behavior Management

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Teeth Removal

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“Ignore the Behaviors, not the individual”

Tools & Equipment for Families Living with Classic Lesch-Nyhan

Caring for someone with Classic Lesch-Nyhan often means finding the right tools and equipment to support safety, comfort, and daily routines. We’ve grouped these tools by category and included information on who can help you access them—whether that’s a doctor, therapist, or another professional.

Each item is meant to make day-to-day care safer and more manageable, with some families also adapting simple materials at home to meet their child’s specific needs.

Tools That Help Keep Our Loved Ones Safe

  • Medical Doctor (MD / Pediatrician / Specialist)

    Definition: Medical doctors provide overall health care, manage medical conditions, and coordinate specialist care. For Lesch-Nyhan, this often includes neurologists or geneticists.

    Role in Equipment & Safety:

    • Evaluates the patient’s overall medical status and needs

    • Prescribes durable medical equipment, braces, and protective devices

    • Monitors safety and effectiveness of devices and recommends adjustments as the child grows

  • Speech-Language Therapist (Speech Therapist)

    Definition: A speech-language therapist specializes in helping individuals communicate effectively, including those who use augmentative and alternative communication (AAC) devices.

    Role in Equipment & Safety:

    • Evaluates communication needs and abilities

    • Recommends AAC devices (from low-tech boards to high-tech speech-generating systems)

    • Suggests modifications or supports to ensure safe and effective use of communication equipment

  • Physical Therapist (PT)

    Definition: A physical therapist focuses on mobility, strength, balance, and overall physical function.

    Role in Equipment & Safety:

    • Assesses posture, movement, and motor abilities

    • Recommends and adjusts wheelchairs, standers, gait trainers, and mobility aids

    • Suggests supports and modifications to prevent injury and promote safe, functional movement

  • Occupational Therapist (OT)

    Definition: An occupational therapist focuses on helping individuals participate in daily activities, including self-care, play, school, and community life.

    Role in Equipment & Safety:

    • Assesses fine motor skills, hand function, and adaptive needs

    • Recommends and helps fit equipment such as braces, adaptive utensils, and supportive seating

    • Advises on padding, positioning, and modifications to reduce self-injury while promoting independence

  • Wheel Chair Vendor

Protective devices and safeguarding equipment should be selected based on each setting, with the appropriate therapist assigned to oversee their use. These devices require daily monitoring to ensure safety and comfort, and a backup option should always be available.

All materials covering padded equipment should be smooth and friction-free to help prevent skin irritation or self-injury from rubbing.

In some cases, equipment may need custom modifications to effectively reduce self-injurious behaviors (SIBs). Families often demonstrate incredible creativity—using items such as pool noodles, foam, yoga mats, and towels—to adapt and create safe, supportive environments for their loved ones.

Protective Devices and Safeguarding Equipment

Use of protective devices or safeguarding equipment

Gary Eddey, MD, ScM(HYG), Kelly  Henry, MSW

Individuals with Classic LND both require and desire the use of protective devices. The goals for the use of devices are to

1) provide comfort to the patient and

2) prevent self-injury and irreversible harm.

3) Safe participation in physical activities (i.e. Special Olympics).

They do not want to hurt themselves, or others, and know that they will if allowed to do so. Individuals with Classic LND become anxious and fearful when left unprotected.

Damage to the mouth and face from teeth is a central form of self-injury; it does not respond adequately to the use of oral devices, and the standard of care is to remove the teeth as soon as this pattern of injury is identified. The devastation that can occur to the face using the teeth to self-injure warrant an alert to physicians.

The Joint Commission accepts that in LND protective devices are enabling because they prevent self-injury and reduce stress and the fear of self-injury. The Joint Commission and the Center for Medicare and Medicaid Services (CMS) have exempted these safeguarding devices from their standards regarding the writing of PRN orders for restraints. Because these devices look like restraints, the exception to the standard/rules was written into the Joint Commission manuals, but only for individuals with Lesch Nyhan syndrome. Hence, this standard of care has been adopted by every state CMS office. School systems concerned with the use of these devices should be directed to the CMS and Joint Commission regulations and standards. With time individuals with LND may learn to direct the application of their own protective devices.

To find out about Joint Commision Regulations page adopted by your state on protective devices Google CMS (your State) “exceptions to the restraint rule” Lesch Nyhan.

Centers for Medicaid and Medicare Services PDF page 71405

Parent Testimonials on Teeth Removal

Augmentative and Alternative Communication (AAC)

A young boy sitting on a black and white striped bean bag chair, watching a handheld ACC communication device, with a brown couch in the background.

Augmentative and Alternative Communication (AAC) includes all the ways a person can share thoughts, needs, and feelings without using spoken words. These tools can make a big difference for individuals who have difficulty speaking, helping them connect, express themselves, and be understood.

AAC can look different for everyone. Some people use simple tools, while others use advanced technology. A speech-language pathologist or communication specialist can help determine what type of AAC works best for each person.

No-tech / low-tech options include:

  • Gestures and facial expressions

  • Pointing to photos, symbols, or written words

High-tech options include:

  • Communication apps on tablets or iPads

  • Speech-generating devices

  • Eye gaze communication systems

Because individuals with Classic Lesch-Nyhan may also use AAC in ways that reflect emotional or behavioral challenges—such as indirect or outward aggression, self-sabotage, manipulative behaviors, diversion or disruption, lying, or exaggeration—it’s important to remember that these actions often come from frustration or difficulty regulating emotions.

With consistent support, understanding, and positive strategies, families and therapists can help ensure AAC remains a tool for communication, confidence, and connection.

A young boy with dark hair in a red shirt using a wheelchair with elbow immobilizers- harm reduction devices and chest support outdoors on a grassy area, smiling and looking to his left.

Protective Devices

Protective devices can play an important role in keeping your child safe and preventing self-injury. These tools are used to reduce harm while still allowing for comfort, movement, and participation in daily activities. Always work with your care team to find options that are best suited for your child’s needs and comfort.

Common protective supports may include:

  • Elbow immobilizers – to limit arm bending that can lead to self-injury

  • Wrist immobilizers – to reduce the ability to bring hands to the mouth or face

  • Padding on wheelchairs or seating areas – to cushion and prevent impact

  • Leg restraints – to limit harmful kicking or sudden movements

  • Mouth guards – to protect teeth, lips, and tongue

  • Helmets – to prevent head injury during involuntary movements

Protective equipment should always be used under the guidance of a therapist or healthcare professional, and checked regularly to ensure comfort, safety, and proper fit. Families and caregivers should also monitor devices each day to make sure they remain effective and comfortable for the child.

A young boy in a wheelchair at a baseball field, wearing a Seattle Mariners cap, red socks, and sneakers. Someone is handing him a baseball glove and ball.

Durable Medical Equipment

Durable medical equipment helps support comfort, safety, and mobility in daily life. These tools can make everyday activities—like moving, sitting, bathing, or sleeping—safer and more comfortable for individuals with Lesch-Nyhan.

Every child’s needs are unique, so it’s important to work with your care team or physical and occupational therapists to determine what equipment will be most helpful.

Common types of durable medical equipment include:

  • Wheelchair – for safe and supported mobility

  • Stander – to help promote bone and muscle health by supporting upright posture

  • Gait trainer – to assist with supported walking and strengthening

  • Activity chair – for positioning during play, therapy, or mealtimes

  • Bath or shower chair – for safe bathing and ease of care

  • Toilet chair – to support comfort and safety during toileting

  • Adaptive stroller – for mobility and community outings

  • Orthotic braces (hands and feet) – to help with alignment and positioning

  • Hoyer lift or transfer system – to assist caregivers with safe transfers

  • SleepSafe® bed or similar system – to provide a secure and comfortable sleep environment

  • Foot and arm braces – for protection and support

Your medical team or equipment provider can help you explore funding options, fittings, and adjustments to ensure each device meets your child’s needs and provides both safety and comfort. Many families find that insurance, Medicaid waivers, or nonprofit organizations can help cover part or all of the cost of durable medical equipment.

Vendors
Young man with a disability sitting in an airplane seat, looking out the window, with a neck pillow and armrest supportive device.

Equipment Modifications and Safety Additions

Protective devices and safeguarding equipment should be selected based on each setting, with the appropriate therapist assigned to oversee their use. These devices require daily monitoring to ensure safety and comfort, and a backup option should always be available.

All materials used for padded equipment should be smooth and friction-free to help prevent skin irritation or self-injury from rubbing.

In some cases, equipment may need additional modifications to help prevent self-injurious behaviors (SIBs). Families often show remarkable creativity in finding practical, effective solutions—using simple materials to add extra protection and comfort.

Common caregiver adaptations include:

  • Pool noodles – to soften hard edges or create protective barriers

  • Foam padding – for cushioning around chairs, wheelchairs, or tables

  • Yoga mats – to line surfaces or create soft, safe spaces for movement

  • Towels – for quick, flexible padding or positioning support

  • Pillows – for comfort, positioning, or gentle support in resting areas

  • Headrest extensions – to provide added stability and prevent impact

Every adaptation—no matter how simple—can make a meaningful difference in safety, comfort, and peace of mind. Always consult with your therapy team before making modifications to ensure that they meet your child’s specific needs.

Families are often the best innovators—if you’ve found creative ways to adapt or modify equipment safely, Love Never Sinks would love to hear your ideas and share them with the community.

Share your Story
A woman kneeling and talking to a laughing young boy living with Lesch-Nyhan in a wheelchair in a park at dusk.

Daily Use Equipment

The following equipment is commonly used to support comfort, safety, and independence for individuals living with Lesch-Nyhan disease. Each piece can be customized to fit your child’s needs. Always consult with your physical therapist or Durable Medical Equipment (DME) provider to find the right options and supports.

Wheelchair

Essential for mobility and safety, wheelchairs come in many sizes and may include:

  • Headrest

  • 5-point harness

  • Lateral supports

  • Leg restraints

These features help ensure stability, proper posture, and protection from self-injury.

Stander

A stander helps your child safely maintain a standing position. Benefits include:

  • Improved bone density

  • Support for skeletal development

  • Enhanced head and trunk control

  • Proper hip alignment

Gait Trainer

A gait trainer provides supported movement for children with limited mobility due to muscle control challenges. It can:

  • Increase independence

  • Improve balance and coordination

  • Build muscle strength

Bath/Shower Chair

Specialized chairs provide safe bathing as your child grows. Features may include:

  • Headrests

  • 5-point harnesses

  • Additional supports as needed

Your physical therapist or DME provider can help you choose the best option.

Foot & Arm Bracing

  • AFO (Ankle-Foot Orthosis): Supports weak muscles, reduces spasticity, and keeps feet and ankles aligned.

  • Elbow Immobilizer: Helps prevent self-injury by limiting arm movement.

Footwear

  • BILLY Footwear: Adaptive shoes with zippers along the side and around the toe, allowing easy access over an AFO and secure closure.

EazyHold

Soft silicone grips attach to everyday items (utensils, toothbrushes, crayons) to make holding and using them easier for children and adults.

Elbow Immobilizers

Used to prevent hands from reaching the mouth or face during self-injury, providing gentle reminders to keep arms safe.

Everyday equipment can make life safer, more comfortable, and more manageable. Even small adaptations—like cushions, grips, or braces—can make a big difference in independence, confidence, and peace of mind for both your child and your family.

A smiling young boy with dark hair sitting in a power wheelchair on a parking lot, wearing a green T-shirt.
Young man living with Lesch-Nyhan smiling and laughing in the back of the Van filled with camping gear and supplies.
A young boy living with Lesch-Nyhan smiling in a motorized wheelchair in a living room.

Links to DME Manufacturers

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