Demyelinating Disease Symptom Management

What is Demyelinating Disease Symptom Management?

Any condition that damages the protective covering around the nerve fibers in your spinal cord, brain and optic nerves is known as a demyelinating disease. Multiple sclerosis is the most common demyelinating disease. Others include Acute Disseminated Encephalomyelitis (ADEM), optic neuritis, transverse myelitis, neuromyelitis optica and anti-MOG Associated Disorder.

Demyelinating diseases can cause a variety of symptoms, from blurred vision to fatigue. Fortunately, medication and/or seeing a specialist (like a physical therapist, urologist or sleep specialist) can decrease your child’s symptoms and improve their quality of life.

At the Children’s Health℠ CONQUER Clinic (which stands for Collaboration on Neuroimmunology: Question, Understand, Educate, Restore), the process of managing your child’s symptoms starts with a thorough evaluation. A team of practitioners including a neurologist, neuropsychologist, physical medicine rehabilitation specialist and ophthalmologic technician will spend up to four hours evaluating your child at their first appointment.

From there, this team will share their perspectives and work together to develop a treatment plan that’s tailored to your child. Depending on your child’s symptoms, this plan could include anything from physical therapy, lifestyle changes and potentially medication to an appointment at our Sleep Disorders Center. The CONQUER Clinic will coordinate the specialists that are involved, and work closely with them and your family to reduce your child’s symptoms.

What are the benefits of Demyelinating Disease Symptom Management?

The CONQUER Clinic works with specialists across Children’s Health to improve your child’s quality of life. Our care can include:

• If your child is unable to walk in the usual way (also known as an abnormal gait), we’ll refer you to a physical (PT) and occupational therapist (OT) to help improve their gait and increase muscle tone.
• If your child has learning difficulties, we do an evaluation to sort out how your child learns and processes information. Our neuropsychologists can find ways to make it easier for your child to learn.
• If your child has difficulty controlling their bowel or bladder function, we work closely with our urologists to address any issues.
• If your child has pain, we’ll work to manage their pain and potentially involve a pain management specialist.
• If your child has trouble sleeping, we can recommend interventions and send them to our Sleep Disorders Center to find out what’s interfering with their rest and help improve their sleep quality.

What to expect with Demyelinating Disease Symptom Management?

You can expect a team approach between our CONQUER Clinic and any Children’s Health specialists we refer you to. Whether your child needs to see a specialist at the CONQUER Clinic or within Children’s Health, we’ll coordinate all the care. We work together to develop a treatment plan that fits your child’s needs.

What questions should I ask my provider about Demyelinating Disease Symptom Management?

• Besides medication, what are some other ways we could treat my child’s demyelinating disease?
• How should we track changes in symptoms over time?
• Can symptoms fluctuate and should that be concerning?
• What symptoms should prompt us to contact the clinic?