Epic, Our New Electronic Health Record, Launched October 3
We are excited to launch Epic, our new electronic health record! You may notice us doing things differently, such as using more electronic devices and less paper. As always, your safety is our highest priority and we are here to answer any questions you may have.
If you have an upcoming appointment:
- Make sure to be at the registration desk no later than 15 minutes before your appointment. This may mean that you need to arrive at the clinic location 20–25 minutes before the appointment, so you can complete parking and entrance procedures before registration. This will help us ensure that your visit can begin on time.
- Bring your current medication list so we can check our records carefully and make sure everything is correct.
What is the Neuromuscular Program?
The Neuromuscular Program brings together a team of experts to evaluate and treat babies, children and teens with muscle or nerve problems that cause weakness. We provide care for conditions such as Mytonic Muscular Dystrophy, spinal muscular atrophy, Charcot-Marie-Tooth disease and Duchene Muscular Dystrophy.
Our focus is on understanding your child’s unique needs and improving their function, overall health and quality of life.
How will the Neuromuscular Program meet my child’s needs?
Seattle Children’s offers the most comprehensive care in the Pacific Northwest for children with neuromuscular conditions.
- To care for your whole child, we hold regular half-day and full-day clinics so your child sees their entire team in a single day.
- You and your child may stay in one exam room to make the clinic visit easier for you, with team members coming in and out.
- Doctors, nurse practitioners and therapists from Rehabilitation Medicine, Neurology, Pulmonary and Sleep Medicineand, if needed, Endocrinology and the Heart Center will see your child at the clinic.
- A dietitian, genetic counselor and social worker are also on the clinic team to support your child and family.
- Our experts talk with each other and with you to plan and provide all types of care your child needs.
- If your child has not been diagnosed with a neuromuscular condition and needs evaluation, we have a separate clinic to focus only on this.
- Seattle Children’s is a Muscular Dystrophy Association MDA Care Center and a Certified Duchenne Care Center by Parent Project Muscular Dystrophy, so you know your child always receives the highest quality of care here.
- Each child we treat is unique. Your child’s treatment plan will be custom-made for them based on how their disease affects their health, function and comfort.
- Many neuromuscular conditions get worse over time. As your child’s needs change, so will their treatment. Anytime your child needs experts from other areas of Seattle Children’s, we will involve them.
- We strive to do everything we can for your child at each visit so that your family can avoid extra trips and enjoy life at home with fewer disruptions.
- We’re here whenever you need us – including if your child needs care between your regular clinic visits with your whole Neuromuscular Program team.
- Our active clinical trials program means your child may have the chance to receive promising new therapies by taking part in research that matches their specific situation.
- Seattle Children’s doctors and scientists were involved in clinical trials that led to the approval of eteplirsen (Exondys 51) for Duchenne muscular dystrophy, as well as a trial for nusinersen (Spinraza), approved for spinal muscular atrophy.
- To learn more about neuromuscular research at Seattle Children’s, email us.
Conditions We Treat
- Becker muscular dystrophy
- Charcot-Marie-Tooth disease
- Congenital muscular dystrophy
- Congenital myopathy
- Duchenne muscular dystrophy
- Facioscapulohumeral muscular dystrophy
- Friedreich’s ataxia
- Limb-girdle muscular dystrophy
- Myotonic muscular dystrophy
- Peripheral neuropathy
- Spinal muscular atrophy
What services do we offer?
- Information about your child’s condition, including the outlook, current treatments, new therapies being developed, resources, support and how the condition may be passed down families
- Medicines to help manage your child’s condition, relieve their symptoms and prevent or treat complications
- Physical therapy, occupational therapy and home exercises to improve your child’s strength, movement and ability to do tasks by themselves and to help them adapt to changes
- Orthotics and bracing to support your child’s body or help them move
- Equipment, such as a wheelchair, to help your child be active and independent
- Surgery to release tight muscles and joints (contractures) or to treat severe scoliosis
- Devices to help your child breath (bilevel positive airway pressure, Bi-PAP) or clear their airways (cough-assist machine) if their neuromuscular condition affects their lungs or breathing
- Sleep study to evaluate your child’s breathing while they sleep
- Echocardiography to check whether your child’s neuromuscular condition affects their heart muscle, as well as treatment for heart problems
- Nutrition recommendations to support your child’s muscle strength, bones, digestion and overall health
Read more about Duchenne muscular dystrophy treatment at Seattle Children’s.
Scheduling an Appointment With the Neuromuscular Program
- If you would like a referral to the Neuromuscular Program, talk to your primary care provider. If you have a referral, please call Rehabilitation Medicine at 206-987-2114 to schedule an appointment.
- How to schedule an appointment at Seattle Children’s.
- If you already have an appointment, learn more about how to prepare.
- Learn about Rehabilitation Medicine resources such as useful links, videos and recommended reading for you and your family.
Who’s on the team?
We also have a dietitian, genetic counselor and social worker on the team, and we involve specialists from other areas of Seattle Children’s if your child needs them.
Providers in the program include:
- Steve Alley, Director Neurosciences Center, Surgical/Medical Service Lines and Specialty Programs
- William Robinson, PT, DPT, MSPT, NCS, ATC, administrative director, Rehabilitation Services
- Kira Bernard, RN
- Wendy Huynh, RN, CRRN
- Pauline McCoubrey, RN, CRRN
- Kiko VanZandt, RN, CRRN
- Joanna Yoder, RN, CCM
- Cherie Duvall-White, MSOTR/L
- Connie Leibow, MPT
- Leslie Vogel, RPT
- Sarah Norman, PT, DPT
- Cam Lanier, RDN, CD
- Katie Golden-Grant, MS, LGC