Nemours specialists provide expert, family-friendly care for kids with a wide range of neuromuscular disorders. There are many types, each with different symptoms, causes, treatments and long-term outlooks. Some are genetic (inherited) and some are acquired (they develop during childhood). They include: 

• botulism — a rare condition caused by toxins (harmful chemicals) produced by the bacteria Clostridium botulinum, causing weakness, blurred vision, feeling tired and trouble speaking
• Charcot-Marie-Tooth disease — a group of related conditions that cause muscle weakness, shrinking muscles, and a reduced sense of touch in the lower legs and feet, and lower arms and hands 
• chronic inflammatory demyelinating polyneuropathy  — damage to the covering that surrounds nerve fibers, causing weakness and a reduced sense of touch in the arms and legs
• congenital myasthenic syndrome — muscle weakness that gets worse with physical activity
• congenital myopathies — a group of disorders involving muscle weakness (includes central core disease, myotubular myopathy, nemaline and other kinds of myopathy)
• Friedreich’s ataxia and other kinds of ataxia — trouble controlling muscle movements
• inflammatory myopathies — chronic (ongoing) muscle inflammation that causes weakness (includes dermatomyositis, polymyosistis and inclusion body myositis)
• metabolic myopathies — when muscle cells can’t make enough energy to move (includes carnitine deficiency, hyperkalemic periodic paralysis, hypokalemic periodic paralysis, McArdle disease, Pompe disease and mitochondrial myopathy)
• muscular dystrophy (all types, including Duchenne and Becker) — makes the muscles get weaker over time
• myasthenia gravis — affects the sending of nerve signals, causing weakness in the muscles used for breathing and movement
• paramyotonia congenita — when the muscles tense up (usually in the face, neck, arms and hands), especially after activity or in the cold
• spinal muscular atrophy (SMA) — causes nerve cells in the lower part of the brain and spinal cord to break down, causing weakness and shrinking (atrophy) of the muscles used for moving, eating and breathing

We offer a complete range of advanced diagnostic and treatment options for kids with neuromuscular disease. Our services, which may vary depending on the location you visit and the doctor your child sees, may include:

• expert diagnosis and care led by a team of specialists in neurology and orthopedics
• pulmonology — to help with breathing problems 
• genetics — to help figure out the genetic cause of conditions
• cardiology — to help with heart or circulation problems
• physical medicine and rehabilitation medicine — to help treat muscle function, and evaluate and treat spasticity (muscle stiffness or spasms)
• gastroenterology — to help with digestive issues
• pain management — to help with pain
• physical therapy and occupational therapy — to help kids function and live as independently as possible 
• nutrition — to make sure kids get the nutrients they need
• psychology — to help kids cope with their condition and treatment
• speech and language therapy — to help with speech problems
• orthotic services, including bracing — to help kids move
• assistive technology —  to help kids get around and communicate

There are so many different neuromuscular conditions, so getting the correct diagnosis is key to figuring out the best care plan for your child. At Nemours, our specialists are highly skilled and experienced with all kinds of neuromuscular disease. That means we can often pinpoint a condition when we examine your child. And successful treatment usually requires delivering care using a highly coordinated approach between a team of specialists. That’s what we do — every day. 

Regional Neuromuscular Disease Highlights 

Services, programs and care teams differ at each location. Call for details.

Sometimes the best support and peace of mind comes from families who’ve been there. Meet some of the inspiring kids we’ve been honored to treat.

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