News — Parents of children who have been diagnosed with multiple sclerosis likely have many questions about their child’s condition. Receiving a diagnosis can be overwhelming and searching for information online can turn up complicated explanations.
Laura Saucier, MD, MSc, a neuroimmunologist in the Neurological Institute at Children’s Hospital Los Angeles, breaks down the key information that parents should know about multiple sclerosis (MS).
1. Multiple sclerosis is an autoimmune disease.
“The immune system attacks viruses and bacteria in order to keep our body safe from infection. But sometimes it becomes confused and attacks part of our own body, causing inflammation in healthy tissues,” Dr. Saucier explains. “That's an autoimmune disease. Multiple sclerosis is just one of many autoimmune diseases. It affects the central nervous system, which comprises three parts of the body: the brain, the optic nerves, and the spinal cord.” MS “lesions,” or areas of inflammation, can be identified through magnetic resonance imaging (MRI).
Since the disease impacts the central nervous system, it can have effects on the entire body, including muscle weakness, sensation changes, vision problems, difficulty with balance, fatigue, bladder and bowel control issues, and problems with concentration.
“Multiple sclerosis is also considered a demyelinating disease, which is a word you’ll hear a lot,” Dr. Saucier says. This means the disease causes the confused immune system to target myelin, which is an insulating layer wrapped around nerve fibers.
“If you’ve ever had a phone charging cable and a cat has chewed on it, that can take the rubber insulation off and sometimes the charger doesn’t work very well,” Dr. Saucier explains. “Similarly, when myelin gets damaged due to multiple sclerosis, it’s difficult for the nerves to conduct their electrical signals and communicate with one another.” Fortunately, myelin can repair, though not always perfectly or fully.
2. Pediatric multiple sclerosis involves chronic relapses.
“Multiple sclerosis is a relapsing and remitting disease, at least in its early forms, which is what we see in childhood, adolescence, and young adulthood,” Dr. Saucier says. “This means that inflammatory attacks come in waves.”
For instance, a child may experience an attack on the optic nerve that leads to symptoms such as vision loss. Typically, those symptoms then improve with time and the patient will be stable for a period. Then, there will be another attack of inflammation, perhaps affecting a different part of the nervous system and causing different symptoms. Treatment for multiple sclerosis is focused on eliminating these relapses to prevent new neurologic symptoms from arising and to avoid the accumulation of inflammation-related damage in the nervous system.
3. Multiple sclerosis affects children differently than adults.
“In general, children have more active immune systems than adults,” Dr. Saucier explains. “So children with autoimmune diseases experience more frequent inflammation than adults, which translates to more frequent relapses.”
Untreated pediatric multiple sclerosis relapses 2-3 times more often than adult MS. Despite this, pediatric brains have a remarkable capacity for healing and plasticity, so children tend to recover better from each relapse than adults do. In fact, most children recover so well from relapses that they typically do not develop significant physical disability in childhood or adolescence, particularly when started early on effective MS treatment.
“For most of my patients, if somebody is in their class or on their soccer team, they would have no idea that the individual has multiple sclerosis,” Dr. Saucier says. Most physical disability in MS arises in the progressive stages of MS, which are exceedingly rare in children.
4. It is important to have an in-depth understanding of the diagnosis and treatment options.
“I spend an unbelievable amount of time making sure that my patient families understand their diagnosis,” Dr. Saucier says. “If parents ever feel like they have an incomplete understanding, I want them to please ask me more.”
Dr. Saucier encourages every family to be open and inquisitive. “I want them to really understand what’s going on so that they can help their child and make the best decisions,” she says.
5. Treatments for pediatric multiple sclerosis are highly effective.
“I want families to know that I have so much hope for their child,” Dr. Saucier says. “There have been life-changing advancements in our field in recent years, current treatments are very effective, and prognosis has improved by leaps and bounds. I personally believe that for today’s children, multiple sclerosis will be cured in their lifetime.”
Current treatments are known as disease-modifying therapies. “These are medications that suppress or modulate the immune system in order to prevent inflammatory attacks or relapses,” Dr. Saucier explains. “Because every patient is unique, there are many different medications. Some are oral pills, others are injections or infusions. There are several safe and effective options.”
Dr. Saucier works with each family to determine which strength of medication is the best choice for them and to consider the side effects of each medication. There are three tiers of medication, but Dr. Saucier tends to recommend the moderate or strongest efficacy tiers because they are most effective at putting the disease in remission and stopping relapses.
“We also of course work to minimize any side effects of the medications and act as advocates for our patients,” she says. “We liaise with their schools if needed to ensure that they have extra time to complete assignments or any other accommodations that they may need.”
Ultimately, Dr. Saucier encourages families to be optimistic. “With the highest efficacy treatment we have, the vast majority of our patients will never have another clinical relapse and many will never even see another inflammatory lesion pop up on an MRI,” she says. “I want parents to know that there are a lot of reasons to have hope.” Dr. Saucier emphasizes that, today, multiple sclerosis is far more treatable with a far better prognosis than even just a decade or two ago.
“And here at CHLA, we have multiple fellowship-trained pediatric neuroimmunologists on our team, as well as a neuroimmunology nurse who is specifically trained in multiple sclerosis,” she adds. “We know multiple sclerosis, and we are here for you.”
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