Pediatric MS was virtually unheard of before the definition of the disease was changed in 2001, to allow patients under 15 to receive the diagnosis. Now 8,000 have been diagnosed worldwide.
Karen Weintraub, Special for USA TODAY 12:10 p.m. EDT July 30, 2013
BOSTON — Two years ago, at age 12, Peter Marggraf of Newfields, N.H., suddenly started talking oddly, his face went blank and he couldn’t remember what year it was. He spent 10 days at Boston Children’s Hospital and still, no one was sure what was going on.
Victoria Esselman was also 12 when she had her first episode. Her right arm had been tingling for several months — as if it had fallen asleep and couldn’t wake up — and then her eyes started moving in different directions. “One went one way, the other went the other way,” her mother, Odette Esselman, of Medford, Mass., said.
Victoria ended up at Mass General Hospital for Children, and both she and Peter were eventually diagnosed with multiple sclerosis.
MS is well known as a devastating disease, usually striking women in their mid-30s or 40s. Patients are told that they are heading down an uncertain path that will lead to clumsiness and discomfort, and possibly a wheelchair and/or loss of brain function.
As devastating and mysterious as such a diagnosis is in adults, the disease is often worse in children, who generally have more troubling episodes, as well as more years to decline. Though quite rare — only about 8,000 children have the disease worldwide — pediatric MS is gaining medical attention.
Pediatric MS was virtually unheard of before the definition of the disease was changed in 2001 to allow patients under 15 to receive the diagnosis. The youngest child diagnosed so far was just 20 months.
The field has come far since then, said Lauren Krupp, a neurologist and director of the Lourie Center for Pediatric MS at Stony Brook University in Long Island, N.Y.
Drug companies are now poised to begin the first clinical trials in children with MS. Nine centers are now collaborating across the country to share data and treatment advice. And researchers, including Krupp, believe that studying these children will help them better understand the environmental triggers that lead to MS and perhaps all autoimmune diseases.
“There is reason to believe that a lot of the factors leading to MS are going to be the same in kids and adults, but you can find it more readily in the kids,” said Krupp. “If you have a 6-year-old, you’ve got a lot better chance of sorting out what the risk factors are (than with a 46-year-old), because they’ve just been exposed to them.”
It’s also possible, she said, that whatever is triggering MS in kids is stronger — and therefore will be easier to find — than it would be in adults.
No one knows what those triggers might be, but there is mounting evidence that obesity, smoke exposure, parents’ autoimmune diseases, and early exposure to the Epstein-Barr virus that causes mononucleosis might all be factors, said neurologist Tanuja Chitnis, director of the pediatric MS center at Massachusetts General Hospital for Children in Boston. The genetic underpinnings of MS might be the same in children who get the disease, or different from adults, she said.
Many adults with MS, in retrospect, realize that they had their first symptoms in childhood. There may be clues in the symptoms of teenagers like Peter and Victoria that have been missed before, said Nicholas LaRocca, vice president of the National MS Society, which this month committed $2.5 million to study pediatric MS.
“We still don’t know when MS actually begins,” LaRocca said. “The more we can understand about pediatric MS, the more it will tell us about the overall trajectory of MS, not only for youngsters but even for those diagnosed in adulthood.”
Until now, kids like Peter and Victoria have had to take drugs approved for adults — and hope their doctors figure out a useful dose for them. In the next few months, though, studies will begin on youths, testing to see what dose might be appropriate and whether one drug might work better than others.
Peter and Victoria have had very different physical and emotional trajectories with MS.
Victoria, now 16, spent a week this month at summer camp for kids with MS — teens she keeps up with all year via Facebook and other social media. She’s had annual relapses and other problems, but says the MS friends she’s made help her get through.
“Those events have become my life,” she said. “They are the reason I’m OK with having MS.”
Peter, an avid fisherman who has struggled to catch up with schoolwork after his “lost” seventh-grade year, doesn’t have other friends with MS — or want them. “I’d just rather do my own thing.”
Mostly, he just tries to forget he has the disease.
“I feel perfectly normal,” he said. “I don’t think it hinders me — only when I’m actually sick.”
http://www.usatoday.com/story/news/nation/2013/07/27/pediatric-multiple-sclerosis/2589989/
Multiple Sclerosis is a chronic and often disabling disease that attacks the central nervous system which consists of the brain, spinal cord and optic nerve. Everything we do whether it is taking a step or even breathing all goes through the central nervous system. The way our central nervous system functions is through the use of neurons, which are electronically excitable cells that process and transmit information through signals. The signals that neurons send and receive are essential to the function of the central nervous system and allows the human experience to exist. Normally the path of these nerve signals is protected by the myelin sheath which is essential for the signals to reach their destination. However the pathways of a person with MS, the myelin is eroded and the nerve fibers underneath are damaged which affects the signals. The reason for the loss of myelin is believed to be caused by the mistake attack by immune cells that protect the body from foreign substances. MS is thought to be triggered in a genetically susceptible individual by a combination of one or more environmental facts which causes something to go wrong with the immune cells and they seek out the myelin and attack. Unpredictable symptoms such as numbness and tingling or blindness and paralysis are caused by distorted signals from the damaged myelin and these symptoms may be a temporarily or permanently lost. The progress, severity and specific symptoms of MS are unpredictable and vary from one person to another.
People diagnosed with MS can experience one of four different courses of the disease ranging from mild to moderate to serve. Relapsing-Remitting MS is clearly defined attacks of worsening neurological function. These attacks are followed by partial or complete recovery periods in which the disease does not progress. Approximately 85% of people are initially diagnosed with this type of MS. Primary- Progressive MS is characterized by slowly worsening neurological function from the beginning with no distinct relapses or remissions. 10% of people are diagnoses with Primary-Progressive MS and the progression rate may vary with occasional minor improvements. Secondary-Progressive MS is developed from relapsing-remitting MS and the disease worsens more steadily, with or without occasional flare-ups, minor recoveries or plateaus. Approximately 50% of Relapsing-Remitting MS patients developed this form of the disease within 10 years; however, disease-modifying medications have seemed to delay the transition. The final form of MS is Progressive-Relapsing MS which is relatively rare and people experience steadily worsening neurological function with clear attacks. They may or may not experience some recovery following the relapses, but the disease continues to progress without remissions.
In order for a physician to diagnosis a person with MS they must prove specific evidence that fit the criteria for the diagnosis. They must find evidence of damage in at two separate areas of the central nervous system. They must find evidence that the damage occurred at least one month apart and rule out all other possible diagnoses. The criteria to diagnose MS includes specific guidelines for using MRI, VEP and cerebrospinal fluid analysis to speed up to diagnostic process. A MRI is the best imaging technology for detecting the presences of MS plaques or scarring in different parts of the central nervous system. It can also differentiate old lesions from those that are new or active. Visual Evoked Potential (VEP) tests are recordings of the nervous system’s electrical response to the stimulation of specific sensory pathways. With damaged myelin, the response time becomes slower providing evidence of scarring along the nerve pathway. Cerebrospinal Fluid Analysis is sampled by a spinal tap, detecting the levels of certain immune system proteins and the presence of oligoclonal bands which indicate an immune response within the central nervous system. However, because these bands are present in other diseases they cannot be relied on as positive proof of MS. Blood tests are also used to rule out other possible diseases.
There is no cure for MS; however, there are treatment plans in place to modify the disease course, treat attacks, manage symptoms, improve function and safety and provide emotional support. The use of different medications can reduce the activity of the disease and its progression. Adherence to one’s treatment plan is essential to the modification the disease. Treating the attacks caused by the inflamed central nervous system with a high dose corticosteroids can reduce the inflammation and lessen the amount of attacks. Promoting function through rehabilitation is designed to help improve or maintain one’s ability to perform effectively and safely at home and at work. Rehab focuses on overall fitness and energy management while addressing problems with accessibility, mobility, speech, swallowing, memory and other cognitive functions. Patients can also use complementary and alternative medicine, such as yoga or herbal healing, with conventional treatment or instead of the treatments.
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