Multiple sclerosis in children: what you need to know
While multiple sclerosis is typically diagnosed in their late twenties or early thirties, it can strike adolescents as well, presenting unique challenges for both physician and patient.
When adults in one study were asked when they first noticed symptoms, 10% said they started before adulthood, said Dr Vikram Bhise, Head of the Division of Child Neurology and Developmental Disorders at the Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson Teaching Hospital.
“It was only relatively recently that we realized that there was an unmet need,” he said.
The goal for children and adults is to control symptoms so that MS attacks do not reach the level of permanent damage to the myelin sheath protecting the central nervous system.
“Even though children have a better prognosis, the fact that their disease starts earlier means that they are reaching the disability markers earlier,” he said.
Adolescents and their parents have very different reactions to a diagnosis of MS, Bhise observed.
Parents think long term; they want to know if their child will ever get married or be able to have a job.
Adolescents, on the other hand, are concerned with the here and now and the reaction of their peers. “MS has many invisible symptoms, such as fatigue. But for them, their physical aspects are very important to them. They want to know what will be visible to their peers. A really high rate of lameness, ”he said.
“At the beginning, we keep it simple. We remind people that this is not cancer, that their life is not over, that they will not be in a wheelchair for the next year or so, ”said Bhise. “Our goal is for them to be as normal as possible. We want them to blend in with their peers.
In younger patients, a misconception that needs to be corrected is the layman’s perception that women with MS should not have children.
“We definitely tell patients that if you want to get pregnant, it’s doable,” said Dr Mary Ann Picone, from the Multiple Sclerosis Center at Holy Name Medical Center. “Numerous studies indicate that pregnancy does not affect the long-term prognosis of MS.”
Women have an increased risk of relapse during the postpartum period, possibly triggered by major hormonal changes combined with a lack of sleep. But it can be managed with planning, she said.
Although there are currently a few dozen drugs on the market for the treatment of MS, all but one have only been studied in adults. This means that pediatric neurologists prescribe the other choices “off-label” or without official FDA approval to be used in this way.
(And conducting the clinical trials that would be needed to get that approval is difficult. Finding enough people to enroll is difficult, as the disease remains rare in childhood, and parents may come to an agreement. even more difficult.)
While chatting with her young patients, Bhise emphasizes that they need to explain how they react to a new drug. Sometimes teens can decide for themselves that a drug is too strong and instead of letting anyone know, they will simply skip doses.
Unfortunately, this allows MS to resume its relentless attack on the body’s central nervous system.
One of the long-term goals of pediatric neurologists is to teach their adolescent patients the skills they will need to manage their disease as adults.
“In general, we are looking for autonomy,” he said. “We want to see that they take control of the drug, that they can do the injections themselves, if necessary.”
As the teens become adults, Bhise advises them to bring someone on a date with them, even if they are no longer their parent. It can be a friend, boyfriend or girlfriend. “Don’t come alone,” he told them. “Bring someone anyway.”
Kathleen O’Brien was a longtime columnist and health writer for The Star-Ledger. She continues to report on all facets of the healthcare industry for Jersey’s Best.
This article originally appeared in the Fall 2021 issue of Jersey’s Best. Subscribe here for in-depth access to all that makes Garden State great.