Therapies
Welcome to our guide on therapies for managing Lesch-Nyhan Syndrome (LNS). Timely initiation of both conventional and alternative therapies is crucial for enhancing overall development and well-being. This section provides a detailed overview of various therapy options, each tailored to address specific needs and challenges associated with LNS.
Suggested First Steps
Health Tips
Therapies
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Tools & Equipment
Behavior Management
“Ignore the Behaviors, not the individual”
Teeth Removal
Therapies
It is vital to begin therapies as soon as possible. Conventional and alternative therapies will assist with overall development.
Physical Therapy
Occupational Therapy
Speech and Language Pathologist
Dysphagia & Swallowing Therapy
Behavioral Therapy
Selective Ignoring and Redirection for Behavior
Social Emotional Wellness
It is important to take time for personal wellness, as well as provide management strategies for your child.
Social Emotional Learning and managing anxiety:
Daily massage
Breathing exercises
Listening to music
Meditation
Change of routine
Getting outdoors
Read a book
Explore something new
Physical Therapy
Children with Lesch-Nyhan disease, including the LN variant, often enjoy the physical activities involved in physical therapy. This not only contributes to their treatment but also adds an element of enjoyment to the therapeutic process.
Physical therapy plays a crucial role in treating individuals with Lesch-Nyhan disease, particularly benefiting LN variant children by enhancing their mobility, balance, flexibility, and muscle strength. However, its effectiveness is relatively lower in children with classic Lesch-Nyhan disease.
Spasticity
Physical therapy can reduce the muscle tension and discomfort associated with tight muscles.
Hypotonia
Assist with gaining strength and mobility.
Occupational Therapy
Occupational therapy aims to enhance children's fine and gross motor skills, emotional strength, sensory and emotional regulation, as well as range of motion.
Occupational therapists collaborate with physical therapy to identify optimal assistive devices.
Additionally, they address challenges related to swallowing (Dysphagia), which develops with age.
Some kids have Dysphagia from their earliest years.
Speech and Language Therapy
Most children with LND have dysarthria (poorly articulated speech) and are difficult to understand.
Some children are considered non-verbal and need communication devices such as Augmentative and Alternative Communication devices (AAC) and eye gaze technology.
(Classic LN individuals can sometimes use devices to harm themselves)
Speech Therapists can also provide assistance with swallowing (Dysphagia) which develops with age.
Some kids have Dysphagia from their earliest years.
Behavioral Therapy
The only method that has proven success in reducing unwanted behaviors associated with LND is to ignore and redirect.
Behavioral responses such as punishment and scolding do not work and tend to exacerbate behaviors.
School age children may benefit from a Functional Behavior Assessment and Behavior Intervention Plan.
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.