Navigate: Suggested First Steps
Early intervention can make a world of difference after a Lesch-Nyhan diagnosis. Getting connected with the right care team and resources early on helps set the foundation for your child’s lifelong health and well-being. From finding trusted physicians — including a nephrologist and neurologist — to enrolling in state-funded Early Intervention programs and applying for Medicaid waivers, these first steps are key to building strong, coordinated care. Love Never Sinks also offers a comprehensive Welcome Packet to guide you through each step, making it easier for families to access the support and information they need right from the start.
Suggested First Steps
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Your First Steps After Diagnosis
Receiving a diagnosis of Lesch-Nyhan syndrome (LND) can feel overwhelming, but you are not alone. Taking a few key steps early on can help your child receive the care and support they need to thrive.
Early intervention is vital!
Here are some important steps to take as you begin this journey:
Find a knowledgeable physician who can oversee your child’s care and coordinate a team of specialists for long-term support.
Connect with a nephrologist (kidney specialist) who will monitor kidney health, track uric acid levels, and prescribe medication if needed. Your pediatrician can help with a referral.
See a neurologist to help manage movement, medications, and overall care.
Enroll in Early Intervention services. These state-funded programs provide therapy and developmental support for children from birth to age 3. You can find your state’s program here:
👉 CDC Early Intervention Resources
Apply for a Medicaid Waiver
Many states offer Medicaid waivers—sometimes called the Katie Beckett Waiver—that help children with complex medical needs or long-term disabilities receive care at home. Eligibility is based only on the child’s income and resources, not the parents’.
Find details by state here:
👉 Kids’ Waivers | By State
At Love Never Sinks, we’re here to help you take these first steps with hope and confidence. Each action you take helps build a foundation of care, connection, and understanding for your child and family
Our Welcome Packet includes all the important information shared on this website — it’s simply another way to have everything you need at your fingertips..
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.