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Pediatric Neuromuscular Clinic

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Department Main Image

Overview

Akron Children’s Hospital’s Neuromuscular Clinic is composed of a multidisciplinary team of specialists with expertise in chronic conditions affecting the muscles and nerves. We strive to make complex care simpler for families, with combined specialty visits, combined exams, and the full range of telehealth technology. We are a Certified Duchenne Care Center through the Parent Project for Muscular Dystrophy and we are ranked among the best children’s hospitals in the country for pediatric neurology and neurosurgery.

Facing a new diagnosis of a neuromuscular condition can be frightening and overwhelming. The neuromuscular clinic is dedicated to providing our patients and families with the support they need and the highest quality of care.

Locations/Contact Us

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Neuromuscular Clinic
Akron Children's Hospital Neuromuscular Clinic, Akron
Considine Professional Building
215 West Bowery Street
Suite 4400
Akron, Ohio 44308
Fax: 330-543-8054
More about this location...
Map & directions

Our Doctors/Providers

Department Heads:
Kathryn Mosher
Kathryn Mosher, MD

Pediatric Physiatrist; Director, Neuromuscular Clinic

Physicians/Providers:

Sarah Elizabeth Friebert, MD

Director, Pediatric Palliative Care; Pediatric Palliative Care Physician; Sarah Elizabeth Friebert, M.D. Leadership Chair in Pediatric Palliative Care

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Matthew Ginsberg, MD

Pediatric Neurologist

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Ryan Heksch, MD

Pediatric Endocrinologist

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Stephen Manu, MD

Pediatric Cardiologist

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Todd Ritzman, MD, FAAOS, FAOA

Chair, Department of Orthopedic Surgery; Director, Spine Program; Pediatric Orthopedic Surgeon

Accepting New Patients

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Ian Rossman, MD, PhD

Pediatric Neurologist

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Debbie Toder, MD, FAAP

Medical Director, Pulmonary Function Testing Lab & Ventilator and Respiratory Technology Program; Pediatric Pulmonologist

Accepting New Patients

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Catherine Ward-Melver, MD

Clinical Geneticist

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Other Providers:

Taylor Lewis, OT

Occupational Therapist

Some of the Conditions We Treat...

Becker muscular dystrophy is a genetic disorder that gradually makes the body's muscles weaker and smaller. It causes less severe problems than the most common type of MD, Duchenne muscular dystrophy. Learn more...

Related articles:

Charcot-Marie-Tooth disease (CMT) is a neurological disorder. It causes muscle weakness and numbness, most commonly in the arms and legs. Learn more...

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Myasthenia gravis (or myasthenia) happens when voluntary muscles get weaker. Treatments can help symptoms. Learn more...

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A teen athlete talks about why he won't let his condition take him out of the game. Learn more...

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Treatments

Gene-based Therapies

All patients seen in the neuromuscular clinic receive multidisciplinary supportive care, which includes assessments of physical and occupational therapy needs, braces, equipment, and nutrition counseling. For some conditions, patients may be followed by lung or heart specialists and receive respiratory therapies or medications for heart function. Orthopedics is also available to address scoliosis and other musculoskeletal deformities. Our social worker and nurse program coordinator work to coordinate between specialists and connect families to financial, educational, and community resources. Our palliative care team is available as well to provide additional support as needed.

An expanding number of neuromuscular conditions may be treated with targeted, genetic therapies. We provide the following treatments for appropriate patients.

Duchenne Muscular Dystrophy

  • Eteplirsen (Exondys51)
  • Golodirsen (Viondys53)
  • Viltolarsen (Viltepso)

Spinal Muscular Atrophy

  • Gene replacement therapy: Onasemnogene abeparvovec-xioi (Zolgensma)
  • Nusinersen (Spinraza)
  • Risdiplam (Evrysdi)

Pompe Disease

  • Alglucosidase alfa (Lumizyme)

https://www.akronchildrens.org/files/COVID-Inforgraphic.html

What Should Families Expect When They Come for an Appointment?

At Akron Children’s, your child’s health and safety is our priority. Please continue to bring your child for wellness visits, vaccinations or sick care appointments that keep children healthy. We want to assure you that we have taken additional precautions to ensure a safe environment for your child and family. The following are additional safety efforts, in addition to our normal cleaning protocols, that we are taking to help you be comfortable bringing your child to an appointment.

Limiting the Number of Caregivers and Face Covering

The number of caregivers permitted to accompany a child to an appointment is dependent on the department you are visiting. Everyone visiting an Akron Children's facility is asked to wear masks or face coverings, except for kids under 2 or those with sensory issues. Masks will be provided for visitors who do not bring their own.

Health Screening Station Ahead Sign

Checking In and Screening of Visitors

Akron Children's now offers Mobile Check-in to limit your exposure to others. You'll receive a text an hour before your child's appointment arrival time. Click the link in the text when you reach the Akron Children's facility for your child's appointment. You will receive a confirmation text that reminds you to wait in your car. Once we determine appropriate spacing is available inside the building, you'll receive a third text to let you know it's OK to come in for your appointment.

Immediately upon entering the building, your temperature will be taken, either by a thermal scanner or a greeter who will also ask you a few questions.

If you are in a waiting room, you’ll notice signs and a limited number of chairs. This is to remind our patients to keep 6 feet of physical distance between your family and others.

Precautions If You Suspect Your Child Has COVID-19

Call your child’s healthcare professional if your child is sick with fever, cough, or difficulty breathing and has been in close contact with a person known to have COVID-19, or if you live in or have recently traveled from an area with ongoing spread of COVID-19. Your health care professional will work with Ohio’s public health department and the CDC to determine if your child needs to be tested for COVID-19.

View all the safety precautions Akron Children's is taking.

Clinical Trials

Our specialists can help families select and learn more about clinical trials for various neuromuscular conditions, and we incorporate discussion of clinical trial eligibility into our routine care. You can view a current list of active research studies at Akron Children’s Hospital.

Families interested in clinical trials can also search at clinicaltrials.gov

Diagnostic Testing

Diagnosing a neuromuscular disorder can sometimes be challenging. Akron Children’s Hospital offers several tests that can be useful in certain circumstances.

Genetic Testing

Our neuromuscular team includes specialists in selecting appropriate genetic testing, obtaining insurance authorization, and analyzing results. We work hard to make sure cost is not a barrier to identifying a neuromuscular condition.

EMG and NCS (electromyogram and nerve conduction studies)

EMG typically involves two components. The first, called nerve conduction studies, involves stimulating nerves through the skin and recording over other parts of the nerve or muscle. The second component involves inserting a tiny pin into several muscles and recording the electrical activity of the muscles. This typically feels like a small pinch or dull ache but is not typically severely painful. Our doctors and technicians are experienced in performing this test in children and aim to make the test as comfortable as possible. We also work with pediatric sedation specialists when needed.

Nerve and Muscle Imaging

Occasionally, imaging tests may be helpful in diagnosing a neuromuscular condition. This may include MRI of the muscles or ultrasound of the muscles and nerves.

Muscle and Nerve Biopsy

In many cases, we can diagnose a neuromuscular condition with genetic testing or other non-invasive diagnostics. However, occasionally a muscle or nerve biopsy may be necessary. Our surgeons and anesthesiologists are skilled in providing safe and compassionate care, and our pathologists and neuromuscular specialists work together to analyze the results.



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