Manage: Suggested First Steps

Managing Lesch-Nyhan syndrome can be complex and challenging, requiring a comprehensive approach. Be sure to read through all sections, including health tips, therapies, tools and equipment, and behavior management, as they will help make your journey easier.

Suggested First Steps

You are here (read below)

Health Tips

Therapies

Tools & Equipment

Behavior Management

Ignore the Behaviors, not the individual

As you begin your journey, these are our suggested first steps:

Early Intervention is Vital! Get connected with the following:

  1. Identify a Physician who can care for your child and manage a team of professionals for the life of the individual.

  2. A Nephrologist is a critical doctor to have on your child’s team. They will monitor kidney function and prescribe a medication if necessary to keep uric acid levels down.  Ask your pediatrician for a referral.

  3. A Neurologist will assist with overall care and medication management.

  4. Early Intervention is a state funded therapy program for children from birth to 3 years old.

    https://www.cdc.gov/ncbddd/actearly/parents/states.html#textlinks

  5. Apply for a Medicaid Waiver

    • Often referred to as the Katie Beckett waiver, many states in the US have Medicaid waivers that allow children under the age of 19 who have complex medical needs or long-term disabilities to become eligible for Medicaid coverage. This enables children to receive care in a home setting. Only the child’s income and resources (NOT the parents) are used to determine eligibility.

    • This website provides a comprehensive resource of all available medical waivers, sorted by state.  Kids' Waivers | By State

We’ve also created a Welcome Packet that contains all essential information from this website. Don’t worry, all of the info in the packet is also on this website.

 The Welcome Packet

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.