Education about Pediatric MS is on the rise, and more children under 18 are being diagnosed with MS. With all of the new information and education, there is still a need for awareness that children have MS, too. Children are often misdiagnosed or not diagnosed at all.
For so long, MS was misunderstood. In the 1950's, when I was a child, it was thought MS was the crippler of mostly young adult women. With time and research, the medical community began to understand more. MS did not always mean paralysis, nor did it follow a predictable path. In fact, MS did not discriminate. It affected both men and women, and it affected all ages. Older people were being diagnosed and even babies!
MS affects 4.5 million people worldwide, and 2-5% of them are children. Since the population for MS was always considered an adult disease, children who presented MS-like symptoms were often misdiagnosed. It was difficult to diagnose adults and even more difficult to diagnose children, especially since pediatricians often did not consider MS to be an option. It is a shame children went through adolescence and teen years with MS-like symptoms without ever knowing why.
Pediatricians who saw MS-like symptoms in young kids thought it must be something else. This was true beginning with Dr. Jean Martin Charcot's patients in the 19th Century. In the late 20th Century, however, many young adults were encouraged to search their medical history. Some remembered symptoms they had when younger. This indicated the patients could have had MS long before their diagnosis, maybe even as young as 10.
With that information in hand, teens who presented MS-like symptoms were tested and diagnosed. These teen patients began to remember similar symptoms even earlier than ten. Before 1990, the age of MSer diagnosis was generally considered to be between10 and 50. There were undoubtedly older and younger patients identified, but that was the exception. Although children have been complaining of MS-like symptoms, they were generally not considered to be candidates.
In 1999, the University of Catania in Italy published a paper about a study of MS in children under 6. The study included patient information from their institution. While all of these patients exhibited classic symptoms, less than half were supported by the laboratory. The study group was small, but approximately 10% began showing these symptoms before they were two, more than half of those before age one. The study concluded that children under six could be consistently diagnosed using the Poser criteria (which preceded the McDonald criteria I most often use as a reference), and they suggested a lower age be accepted for MS diagnosis.
MS was not generally considered a children's disease until recently, and so many conditions mimic MS. Few children are articulate to the point of describing severity of pain. This can often pinpoints the difference between one condition and another. Just by being kids they hindered their own diagnosis.
Here are a few symptoms that copy life experiences and reasons why they did not immediately point to MS:
- Clumsiness - Has anyone seen a toddler or adolescent who is not clumsy?
- Incontinence - Toddlers often have potty issues, and sometimes bed-wetting lasts for years longer.
- Cognitive difficulties - These may often appear as disinterest or slowness.
Just as in adults, symptoms are missed or misinterpreted, and children with MS are misdiagnosed. If one symptom becomes active, physicians may be prone to treat that symptom rather than identify and treat a disease. If the symptom or pattern of symptoms allows the child's health care team to test and subsequently diagnose MS, treatment is the next logical step. This all sounds familiar to adult MSers, but there are some unique symptoms to children, including seizures and lethargy. Then there is a problem surrounding treatment. There is not a child's version or dosage of Betaseron.
According to the National MS Society, the disease-modifying drugs that have been tested for adults are probably safe and tolerated in children. However, these drugs have not yet been tested on children and that may prove to be problematic. Clinical tests will be helpful because the course of the disease differs between children and adults. A child diagnosed before the age of two has a poor prognosis and could benefit.
According to a study published in the New England Journal of Medicine, "Patients with childhood-onset multiple sclerosis take longer to reach states of irreversible disability but do so at a younger age than patients with adult-onset multiple sclerosis." Children who began living with MS in early childhood take 10 years longer between onset and reaching secondary progressive MS than do adult-onset MSers. However, they are usually 10 years younger, just because they started younger. Childhood-onset also means it takes 10 years longer between onset and irreversible disability.
Time and research continue and more is understood about MS, including the fact that MS is everyone's disease. More education and more awareness will allow everyone who exhibits MS symptoms to be taken seriously. Just because it has always been one way doesn't mean it will always be the same. We underestimated the numbers of young MSers and did not determine specific treatment or child medication doses.No problem can withstand the assault of sustained thinking. ~ Voltaire
Notes and Links:
American Academy of Neurology - Children under 6 - Children under six were diagnosed as early as two years old. Of these, more than half had clinically definite MS and more than half of these had their first identifiable attack before the age of one; these very young children have the worse prognosis
New England Journal of Medicine
Children's Hospital Boston - Pediatric Views - information about symptoms and related conditions
National Pediatric MS Center - links to information for kids, professional, and more
Published On: August 04, 2010