Neuromuscular Sleep Clinic
The Cincinnati Children’s Neuromuscular Sleep Clinic helps children with neuromuscular disorders who have chronic and complex sleep problems. These sleep problems stem from breathing issues caused by conditions like:
- Duchenne muscular dystrophy (DMD)
- Spinal muscular atrophy (SMA)
- Spinal cord injury
This clinic brings together experts from our Comprehensive Neuromuscular Center. It is one of only a few clinics in the country where a range of specialists assess patients together. These specialists come from cardiology, endocrinology, rehabilitative medicine, neurology and pulmonary/sleep medicine.
The Comprehensive Neuromuscular Center has three, full-time pediatric sleep specialists. This is rare among other neuromuscular programs.
At Cincinnati Children’s, we offer:
- Treatment and evaluation from doctors who are international experts in neuromuscular diseases as well as pulmonary experts who are board certified in sleep medicine
- A treatment plan that’s personalized to your child’s unique needs
- Real-time collaboration and communication between different specialists, all working together to provide the best treatment for your child
- Simplified and coordinated care, so you don’t have to worry about managing appointments and specialist schedules
Conditions We Treat
We treat kids whose neuromuscular conditions disrupt sleep. These conditions can include:
- Duchenne muscular dystrophy (DMD)
- Spinal muscular atrophy (SMA)
- Becker muscular dystrophy
- Charcot-Marie-Tooth disease/hereditary motor-sensory neuropathies
- Congenital muscular dystrophy
- Congenital myopathies
- Friedreich’s ataxia
- Inflammatory neuropathies (acute and chronic)
- Limb-girdle muscular dystrophy
- Muscular dystrophies (not otherwise specified)
- Metabolic myopathies
- Myasthenia gravis
- Myotonic dystrophy
- Periodic paralysis
Neuromuscular conditions can make it hard to breathe effectively, particularly while sleeping. As a result, children who have these breathing problems may find it hard to stay asleep. Other symptoms can include:
- Morning headaches
- Daytime sleepiness (from repeated awakenings at night)
- Loss of appetite, which can lead to slow weight gain or weight loss
- Difficulty concentrating
- Irritability and moodiness
Our Treatment Approach
Every patient starts with a thorough evaluation at our Comprehensive Neuromuscular Center. This means you and your child will meet with a range of experts, including specialists from:
- Neurology
- Pulmonology
- Physical medicine and rehabilitation
- Endocrinology
- Cardiology
- Physical therapy
- Nutrition
During the evaluation, we’ll look at how your child’s neuromuscular condition affects his or her breathing and sleep. Our pulmonary experts are also board certified in sleep medicine, which means they have special training in treating sleep disorders.
After the evaluation, the team will work together to create a personalized treatment plan that’s tailored to your child’s unique needs. Your child's treatment may include a bi-level positive airway pressure machine (BiPAP™). This machine sends pressurized air through a mask into your child’s nose and mouth. This process helps to help open up the lungs and support each breath.
The BiPAP is a noninvasive ventilation treatment. If your child feels uncomfortable with the BiPAP, we have pediatric psychologists who can work with your child and help him or her get used to the mask. They can also offer support to help your child stick with treatment.
In some cases, we may not need to start treatment right away. If that’s the case for your child, we’ll schedule regular follow-up appointments to track changes and start treatment when necessary.
What to Expect
Before meeting with specialists in the Neuromuscular Sleep Clinic, you and your child will start with an evaluation at our Comprehensive Neuromuscular Center. Your pediatrician can refer you to the center for treatment. You may also contact the center for a referral.
Once your child is referred to the center, our care coordinator will work with you to gather information about your child. This information may include previous test results, neurology reports, muscle biopsies and imaging. One of our neurologists will review all this information.
After we get all the information about your child, we’ll schedule a visit with our team. During your visit, you’ll meet with a group of experts who specialize in neuromuscular conditions. Our pulmonary experts will talk with you about your child’s breathing and any sleep issues he or she has.
We may recommend that your child has some more tests, including:
- A pulmonary function test in our Pulmonary Function Laboratory. These tests measure how well your child breathes.
- An overnight sleep study, which records your child’s sleep behaviors. Your child will stay overnight at our Sleep Laboratory for the sleep study.
After the exam and testing, the team will collaborate to develop a treatment plan. We’ll work with you to schedule follow-up appointments as needed. We may use these appointments to go over test results and see how your child is doing with treatment. We’ll also address your questions and plan for future treatments, if needed. If you are traveling from out of town, we will work to schedule tests and clinic visits as close together as possible. We also offer concierge services and other resources for traveling families if needed.
If another doctor or pediatrician referred you to the center, our team will communicate with them throughout the process. This will help make sure your home doctor can stay informed about your child’s progress and help manage any follow-up care, if needed.
Meet the Team
This clinic brings together pediatric pulmonologists and nurse practitioners trained in sleep medicine. Our team includes:
- Raouf S. Amin, MD
- Carolyn M. Burrows, MSN, APRN, CNP, PNP
- Neepa S. Gurbani, DO
- John E. Pascoe, MD
- Hemant Sawnani, MD
