Multiple sclerosis (MS) is an autoimmune condition that affects the central nervous system (brain & spinal cord). The diagnosis is made clinically, meaning that there is no simple test to determine if your child has MS. Pediatric MS affects girls more than boys. It is very rare, impacting 1-2 out of every 100,000 children. In the United States, it is estimated that there are 8,000 to 10,000 children with MS. The cause is not fully understood, but it is related to an overactive immune system, which is why it is known as an autoimmune disease. There is a genetic link, but if mom or dad has MS, there is still only a 5% lifetime risk that the child will develop the disease. There is a lot of research looking into environmental triggers as well. Please know that if your child has MS, there is nothing you could have done to prevent it but there are many things you can do to provide great care.
MS is a disease that is said to have separation in time and space. That means that symptoms have to happen over the course of time and involve more than one location in the central nervous system. The patient history and physical exam are key to making the diagnosis. Common symptoms include visual loss, weakness, double vision, and bowel or bladder abnormalities.
MRI is the most helpful test to support the diagnosis. The brain and spinal cord includes a type of insulation around the nerves, known as myelin. This forms the part of the central nervous system called white matter and it is the area most impacted in MS. This is why it is called a demyelinating disease. There are specific areas affected that a radiologist and neurologist will review before making this diagnosis. Given there are many diseases that can often mimic MS, additional workup often includes blood tests and a lumbar puncture.
Treatment of MS has two approaches: treating flare-ups and preventing relapses. High dose steroids are the mainstay for acute attacks. This works because the lesions in MS involve inflammation, and steroids are great drugs to reduce inflammation. There are several options for preventing relapses using very specialized medications. Many of these options involve injections, but there are also IV infusions and oral medications.
Living with MS
Usually it will take some time to make the diagnosis of MS in children. After the diagnosis is made, kids usually follow a course referred to as Relapsing-Remitting in which there are neurological symptoms followed by a full recovery. After about 10-30 years, most patients enter a course known as Secondary Progressive which is characterized by gradual worsening of symptoms. Disease severity varies greatly among patients but it usually progresses slowly and gradually.
Although right now a cure does not exist for multiple sclerosis, this is an area of active research and appropriate treatment makes a huge difference in quality of life. Kids are resilient and often do great in living happy and active lives with the disease.