My child has
The Cook Children's Multiple Sclerosis and Demyelinating Disease Clinic is a recognized center in Texas by the National Multiple Sclerosis Society. This center is one of three clinics specifically offering complete care for children with multiple sclerosis and demyelinating disease in Texas. Early diagnosis and treatment of MS and other DDs in children can help to lessen symptoms and reduce the risk of long-term damage to the child's nervous system. The goal of Cook Children's is to provide the most advanced care to our patients, giving them the best quality of life from childhood into adulthood.
Demyelinating disease actually refers to many different disorders that result in damage to the myelin, the protective cover the surrounds nerve fibers in your brain and spinal cords. This damage can cause the nerve impulses to slow down or stop.
One of the leading causes of demyelinating disease is MS. Most people think of older adults when they hear the term multiple sclerosis (MS). While MS typically occurs in adults, children and teens are also diagnosed with this disease.
It is estimated that at least 8,000-10,000 children and teens, ages 0-18, have MS. Another 10,000-15,000 have experienced at least one symptom. In fact, studies suggest that at least five percent of all people with MS have a history of symptom onset before they reach their 18th birthday. In fact, many people who are diagnosed with MS in their adult years recall having symptoms as children.
MS can be potentially debilitating to the person who has it. MS affects the central nervous system: the brain, the optic nerve (the nerve that connects the eye to the brain), and the spinal cord. Having MS means that your immune system attacks the myelin cover on your nerve cells, causing the covering to become inflamed, eventually damaging the nerve fibers which results in scarring, or sclerosis.
The Cook Children’s Multiple Sclerosis and Demyelinating Disease Clinic provides a whole-child approach for the diagnosis, treatment and chronic care of childhood-onset multiple sclerosis and other similar or related demyelinating diseases of the central nervous system, including the brain, spinal cord and optic nerves such as the following:
Most cases of MS are diagnosed in adults, with the average age being 35. While MS is more rare in children and teens, the average age of diagnosis is 13-16 (around puberty), but has been diagnosed in children as young as 2 years old.
The causes of MS are not known. Studies have shown that there may be a genetic predisposition (risk factors passed down from parent to child through the genes). The risk of developing MS is higher if another family member, such as a parent, grandparent, sibling, aunt or uncle, has been diagnosed with the disease. In cases involving identical twins, approximately 30 percent of them will include both twins.
There are also some genetic studies that suggest people whose bodies don’t metabolize or synthesize vitamin D well may be at risk for developing MS.
Environmental factors that may contribute to a child developing MS include lack of exposure to sunlight, both for the child, and for the mother during pregnancy. Vitamin D levels in the mother during pregnancy may also play a role, and also mothers who smoke during pregnancy. Children who have been diagnosed with Epstein Barr virus (EBV), or mononucleosis, also appear to have a higher risk of developing MS.
For the most part children experience similar symptoms as adults. There are, however, some symptoms that are unique to children, especially younger children before puberty. No two people have exactly the same symptoms, and each person’s symptoms can change or fluctuate over time. One person might experience only one or two of the possible symptoms while another person experiences many more.
Most of these symptoms can be managed very effectively with medication, rehabilitation, and other management strategies.
Some symptoms of MS are much more common than others and might include:
There are less common symptoms that occur in MS, but much less frequently, like:
Because MS can result in long-term and sometimes irreversible damage, making the diagnosis of MS as quickly and accurately as possible is important for many reasons. Since there is now evidence that permanent neurologic damage can occur even in the earliest stages of MS, it is important to confirm the diagnosis so that the appropriate treatment(s) can be initiated as early in the disease process as possible.
The challenge is that currently there are no specific symptoms, physical findings or laboratory tests that can, by themselves, determine if a child or teen has MS. For that reason, the clinic team at Cook Children’s uses several strategies to determine the diagnosis of MS, and to rule out other possible causes of the symptoms your child is experiencing.
Although MS is the most common, other conditions can damage myelin in the CNS, including viral infections, side effects from high exposure to certain toxic materials, severe vitamin B12 deficiency, autoimmune conditions that lead to inflammation of blood vessels (the "collagen-vascular diseases"), and some rare hereditary disorders.
Some demyelinating conditions are considered a one-time illness. Other DDs may be progressive, like MS. Careful examinations may be needed, and may have to be repeated, in order to establish an exact diagnosis among the possible causes of neurologic symptoms.
Your child’s testing will include a careful medical history, a neurologic exam and various tests when necessary, including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis.
The physician takes a careful history to identify any past or present symptoms that might be caused by MS and to gather information that might provide further clues. The physician and members of the care team also perform a variety of tests to evaluate mental, emotional and language functions, movement and coordination, balance, vision and the other four senses.
In many instances, the person’s medical history and neurologic exam provide enough evidence to meet the diagnostic criteria. Other tests are used to confirm the diagnosis or provide additional evidence if necessary.
MRI is the best imaging technology for detecting the presence of MS plaques or scarring (also called lesions) in different parts of the CNS. It can also differentiate old lesions from those that are new or active. Your child will be referred to Cook Children’s Dodson Radiology Center for iMRI. Our new 3 Tesla iMRI system allows the neurological team to see more detail in your child’s brain and CNS.
Neurophysiologic testing or evoked potential (EP) tests are recordings of the nervous system's electrical response to the stimulation of specific sensory pathways (e.g., visual, auditory, general sensory). Because damage to myelin (demyelination) results in a slowing of response time, EPs can sometimes provide evidence of scarring along nerve pathways that does not show up during the neurologic exam. The most commonly used EPs are visual evoked potentials (VEP), brain stem auditory evoked responses (BAER) and somatosensory evoked responses (SSER). Because 75% of MS patients exhibit VEPs, they are considered the most useful for confirming the MS diagnosis.
Analysis of the cerebrospinal fluid, which is sampled by a spinal tap, detects the levels of certain immune system proteins and the presence of oligoclonal bands. These bands, which indicate an immune response within the CNS, are found in the spinal fluid of about 90-95% of people with MS. But because they are present in other diseases as well, oligoclonal bands cannot be relied on as positive proof of MS.
While there is no definitive blood test for MS, blood tests can help rule out other conditions that cause symptoms similar to those of MS, including Lyme disease, a group of diseases known as collagen-vascular diseases, certain rare hereditary disorders, and other infectious or inflammatory causes.
Our clinic provides all approved options for treatment in multiple sclerosis and demyelinating diseases, including oral, injectable and infusible medications. For children who receive their medication through infusion, we arrange for them to receive their medications through the Cook Children’s infusion center. Our expanded clinic provides medical and nonmedical treatments for the secondary symptoms of these diseases, including fatigue, spasticity, muscle weakness, school-related difficulties, mood issues or any side effects of medications. In addition, our clinic provides social support for patients and families, facilitates communication with community resources and coordinates referrals for any other specialists needed for care.
In children, MS may develop more slowly, but there is growing evidence that the risk of disability increases more than in adults due to the earlier onset of the disease. Children may also face more psychological and social challenges that may impact them at school, at home, and with friends. Our goal is to treat the whole child through:
At Cook Children’s Muscular Dystrophy and Demyelinating Disease Clinic we know that it takes real teamwork to provide the best care for your child and your family. Our team includes:
We also work closely with Cook Children’s hematology and oncology infusion center for administration of medications if needed; the Dodson Radiology Center for imaging and neuroradiologist, Hayden Head, M.D., who reviews all relevant imaging studies.
Our goal is to provide access to the specialists and support your child and your family need to manage their disease and ease their symptoms, all working together to create the best possible outcome for your child and for your family.
The medical team at Cook Children’s Multiple Sclerosis and Demyelinating Disease Clinic are experts in the diagnosis, treatment, and ongoing research of MS and other DD conditions. Because of that, we are able to provide advanced care found only in a few pediatric settings across the state, nation and globe. Our team approach includes the patient, parents and caregivers because it allows us to meet your child’s specific needs and, from childhood to adulthood, deliver the highest quality of care every day.
Adrian Lacy, M.D.
View physician biography.
Carla Morton, Ph.D.
View physician biography.
Hayden Head, M.D.
View physician biography.
Kathryn "Kat" Davitt, MOT,CCLS, OTR
Neurology Clinic Certified Child Life Specialist
Stephanie Burns, RN
Neurology Pediatric Nurse Practitioner
Megan Collins, RN
Neurology Clinical Nurse
Leigh Anne Campbell, BSN, RN, CPN
Neurology Education Coordinator
Matthew Reed, LMSW
Neurology Clinic Social Worker
Neurology Research Coordinator
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