Specialists and Therapies

Hunter Syndrome Care

Recommended Specialists & Therapies

Hunter syndrome is a complex, multi-system condition that requires coordinated care from a team of specialists. Whether you're newly diagnosed or years into the journey, knowing what providers to see — and when — can make a big difference in your child’s health and quality of life.

guiding your childs care

Specialists and Therapies for Hunter Syndrome

While every child’s needs are unique, this guide outlines the most commonly recommended specialists and therapies for individuals with neuronopathic MPS II (Hunter syndrome with neurological involvement).

Note: Always consult your MPS specialist or primary care team to tailor this plan to your child’s individual needs.

Key Specialists in Hunter Syndrome Care

These providers play important roles in monitoring and managing different aspects of the disease.

MPS Specialist / Geneticist

An MPS specialist or geneticist coordinates overall care, prescribes enzyme replacement therapy (ERT) if applicable, reviews testing, and discusses new symptoms or treatment options. Patients are typically seen every 6–12 months.

Nuerologist

A neurologist evaluates for seizures and cognitive changes, manages carpal tunnel and other nerve-related symptoms, and interprets EMG and EEG results. Patients are typically seen every 12 months.

Neurosurgeon

A neurosurgeon evaluates for hydrocephalus and spinal cord compression, performs surgery if needed, and is seen as required based on the MPS specialist’s recommendation.

Cardiologist

A cardiologist monitors heart valves and function using ECG and echocardiogram, and patients are typically seen every 1–3 years.

Pulmonologist

A pulmonologist interprets sleep studies and pulmonary function tests, helps manage airway and breathing challenges, and is typically seen every 12 months or as symptoms arise.

Otolaryngologist (ENT)

An otolaryngologist (ENT) evaluates the ears, tonsils, adenoids, and airway, performs surgeries such as ear tube placement or tonsil/adenoid removal if needed, and is typically seen every 12 months.

Audiologist

An audiologist conducts hearing tests every 6–12 months, adjusts hearing aids if applicable, and may recommend ABR testing under anesthesia.

Orthopedist

An orthopedist evaluates the bones, joints, spine, and hips, orders x-rays, and may recommend surgery for conditions such as hip dysplasia or kyphosis. Patients are typically seen every 12 months or as needed.

Developmental-Behavioral Pediatrician

A developmental-behavioral pediatrician helps manage behavioral and sleep issues and is seen as needed or referred by the primary care provider or MPS team.

Endocrinologist

An endocrinologist monitors growth and development, may recommend hormone therapy during puberty, and is usually consulted around ages 8–9.

Gastroenterologist

A gastroenterologist manages reflux and feeding issues, evaluates for G-tube placement if needed, and is seen as necessary.

Pediatric Dentist

A pediatric dentist provides regular dental care, monitors for common issues such as delayed tooth eruption and weak enamel, and is seen every 6 months.

Physiatrist (Rehabilitation Medicine Specialist)

A physiatrist (rehabilitation medicine specialist) recommends adaptive equipment such as wheelchairs and orthotics, helps update therapy plans, and is seen as needed, often in coordination with physical and occupational therapy.

Bone Marrow Transplant Specialist

A bone marrow transplant specialist is involved only if your child has undergone HSCT, monitors post-transplant health, labs, and complications, and sees patients according to the transplant protocol.

Therapies & Education

🗓 Recommended Therapies

These therapies help support day-to-day functioning, communication, and quality of life.

Speech Therapy: Often 1–2 times per week; may include alternative communication evaluations
Occupational Therapy (OT): Builds fine motor skills, self-help strategies, and adaptive tools
Physical Therapy (PT): Supports movement, strength, balance, and posture
Behavioral Therapy (e.g., ABA): Recommended when behavioral support is needed
Hippotherapy, Aqua Therapy, Art or Music Therapy: Additional options to promote engagement and well-being

🎓 Educational & Developmental Support

Early Intervention (0–3 years)
School-based services (3+ years): May include an IEP or 504 plan
Local disability or developmental services: Vary by state/community

State Resource Guides

💙 Support Along the Way

Project Alive is here to walk with you. We know this list can feel overwhelming — but you don’t have to do it all at once, and you don’t have to do it alone. We can help connect you to experienced providers, offer questions to ask, and support you through decision-making.

You can also download our printable Annual Health Maintenance Checklist or reach out to our team for guidance.

📩 Contact us: resources@projectalive.org
📞 Call or text: (313) 312-5483

Neuronopathic Annual Checklist

Attenuated Annual Checklist