The youngest person with MS came from Japan. He was 13 months old. There are 7- and 11-year-old patients in Poland. It’s not an epidemic. Lowering the age at which a diagnosis is made is mainly associated with greater diagnostic possibilities.
In 1395, 15-year-old Lidwina von Schiedam fell while playing on the slide. From then on, she was ill for 38 years. Sources mention that she suffered from periodic visual disturbances, even blindness, paralysis and numbness in her arms and legs appeared and partially subsided. Her life became a torment, at the end of it she was only able to move her left hand. In 1890, Pope Leo XIII officially recognized her as a saint of the Catholic Church. In the Netherlands, she is the patron saint of skaters. Today we can assume that Ludwina was one of the first people to be described with multiple sclerosis. This is indicated both by the course of the disease described by the hagiographers (initially alternating exacerbations and remissions, then gradual progression of disability) and the symptoms themselves. Importantly, the first symptoms appeared when she was a child. Thus, MS was first described in a child.
Some statistics
The symptoms of multiple sclerosis in children were also observed shortly after Charcot’s description of the disease in 1872–1873. However, it is always very difficult to diagnose a child with MS until today, in the age of MRI. This is for a number of reasons. First, doctors assume that MS mainly affects adults. In a way, this is true. Research conducted in the USA shows that only 3% of patients experience the first line before the age of 18. For comparison: as many as 30,8% of patients experienced the first symptoms between the ages of 25 and 35. The gender proportions were similar in both groups, which means that women were ill more often, but before puberty, that is before the age of 12, boys were slightly more ill [1]. This may indicate an endocrine relationship between MS (see PI 3/2009). Second: pediatric neurology knows several medical conditions whose symptoms and initial course are very similar to that of multiple sclerosis. These include, but are not limited to, ADEM (disseminated acute encephalomyelitis syndrome). acute disseminated encephalomyelopathy), leukodystrophies (including known from the movie Lorenzo oil ALD – a genetic disease that affects boys).
Check also: Adrenoleukodystrophy and Lorenza oil
It is especially difficult to distinguish multiple sclerosis from ADEM. Last year, the worldwide Global Dinner Party took place, the proceeds of which were allocated to research into childhood MS, including the creation of the International Group for Research on Childhood MS. It is worth noting that the Polish Multiple Sclerosis Society took part in this action, contributed its small but always important contribution. It was thanks to the work of this group that new criteria for the diagnosis of ADEM were introduced, allowing, among other things, to better distinguish it from MS. According to these criteria, the diagnosis of ADEM is based on encephalopathy (brain damage) that is not associated with MS. Encephalopathy occurs when: there is a well-defined cause causing damage to the brain, a diffuse or disseminated neurological syndrome appears, as well as a psychoorganic syndrome, usually dementia, and disturbed consciousness. ADEM usually follows infection with fever or vaccination. Over 80% of children with ADEM are under the age of 10. The average age is 5-8 years.. However, some patients (as much as 25%) with an initial diagnosis of ADEM are later diagnosed with MS.
Treatment, but not in Poland
Multiple sclerosis in children most often, as much as 90%, takes the form of relapsing-remitting. There are similar symptoms, but emotional difficulties such as excessive irritability, emotional lability and cognitive impairment may occur slightly more frequently. Treatment should also be similar: in the case of relapses, steroids are given, and the progression of the disease is tried to be stopped with immunomodulating drugs. Research is being conducted on giving children the latest preparations, including natalizumab.
Unfortunately, in Poland, the criteria of the National Health Fund provide for the possibility of administering immunomodulating drugs to patients only after the age of 16. This sometimes means the tragedy of the child and his parents. A 12-year-old child who meets the medical criteria may be in such a serious condition after the age of 16 that such treatment will no longer be effective.
Parents then have two options: give up or fight to look for sponsors. Winning, getting treatment, does not mean the end of problems, however. Even adults find it difficult to accept the need to take constant injections (not a very pleasant prospect), and those drugs whose effectiveness is not visible overnight, and whose effectiveness lies only in reducing the progression of the disease, not stopping it. Children, especially younger ones, accept this fact even more difficult or do not accept it at all. Simply drawing blood, vaccinating them can frighten them, not to mention regular injections. It doesn’t get any easier with teenagers, especially in the rebellion phase.
Trouble at school
Multiple sclerosis in children causes a number of problems, not only medical. A lot of questions arise both about the future of the child and its present: treatment options, learning, playing with peers, playing sports. Unfortunately, MS sometimes causes cognitive decline. It is estimated that around 40% of people with MS experience them. Usually these are difficulties with concentration, short-term memory disorders, problems with the choice of vocabulary, spatial orientation. According to a study published in February this year [2], most children develop cognitive deficits that lower their IQ levels. At the same time, they apply equally to verbal and non-verbal skills. The later the first symptoms of the disease appeared, the better cognitive functioning. The authors say that this group of symptoms occurs quite often in children with MS.
In practice, it means difficulties with learning, considerable problems at school. Even the current top student may not be able to cope with the assimilation of the material. Learning is also an effort, cognitive fatigue can be as strong as physical. It is difficult to explain to all teachers what the problem is, that the stress of the exam can make it worse. In such a situation, it is worth asking for help from the board of trustees, the nearest psychological and pedagogical counseling center.
Misfits
Stress related to learning difficulties is not made easier by the frequent lack of acceptance by peers. Children tend to be cruel towards “others”. This difference in MS is both reduced physical fitness and more embarrassing symptoms of the disease: difficulty holding the urine, trembling, for example in the hands, trouble with speech, including chanted speech. Imagine the nightmare of a teenager in a group of peers at school who does not make it to the toilet in time. Wet pants, humiliation, a sense of loneliness, otherness, despair over rejection. At this age, all these emotions are experienced more violently. If you add to this volatile moods, depression common in MS, a lack of faith in the future, it creates an emotional hell that is difficult to get out of on your own, and in the face of which parents can feel completely helpless.
Future
Fortunately, it’s not the case that childhood MS progresses quickly and must be a severe disability in the future. Usually, the disease progresses much slower than in adults. The plasticity of the young brain is also greater and the body’s better response to treatment.
Child: Patrycja
Parent: Agata
The first flush was three years ago when the daughter was 15. It started with numbness of the left hand and brief dizziness. The doctors made the diagnosis after about a month and a half of tests. When I told Patricia that she had multiple sclerosis, it did not reach her at all because she was unaware of the seriousness of the disease. Now she is resigned to it. The disease is not that big of a problem for her, because you can’t see it at all. Thanks to this, she functions normally at school, her life is practically no different from the one she led before the first flush. Teachers and closest friends know about her health condition. He’s been taking interferon for a year. Before she started taking it, that is for the first two years, she had two shots. One in the past year, so it’s hard to say if the drug helps her. But I don’t know what would have happened if she hadn’t taken it. I am most afraid of what will happen in a few or a dozen years, whether she will cope or suffer from a permanent disability.
Child: Daniel; Parent: Agnieszka
The son became ill when he was 15 years old. Three very hard years have passed since then. Doctors from the Children’s Memorial Health Institute immediately knew it was multiple sclerosis because his entire right body was numb, but he was also examined for other diseases, just in case. He learned about the disease from doctors. He then tried to commit suicide. Even though it’s been so long, he still doesn’t believe he has MS. He says doctors are wrong, they don’t know each other and they definitely don’t have MS. Since June 2008 and receives interferon. She’s still worried about what will happen when the refund is over. He is convinced that a wheelchair is waiting for him. The drug works very well for him. He’s only had one throw since he takes it. Previously, he had a dozen or so. He doesn’t want to talk to anyone about his illness, he doesn’t want anyone to feel sorry for him. On the other hand, he is hurt by the comments of his peers who, seeing his trembling hands, ask what drugs he was taking, what kind of alcohol he drank. They laugh at him. He is nervous, hyperactive. He has the feeling that the next day he may not get out of bed, so he wants to try everything. I try to read as much as possible about MS. When she shows him some interesting book on the subject, he doesn’t even want to look. He runs away from this disease. To this day, I can see a boy in the hospital who had MS. He was a vegetable. I don’t want my son to end this way. We have no money, we can barely make ends meet. I have two more daughters, one has epilepsy. I won’t be able to pay for the drugs. My son is under the care of a psychologist, but I’m still afraid that he will want to kill himself again. This path was chosen by a relative of a friend who had MS.
Source:
[1] T. Chitnis, B. Glanz, S. Jaffin, B. Healy, Demographics of pediatric-onset multiple sclerosis in an MS center population from the Northeastern United States, “Multiple Sclerosis“ 2009, nr 15(5), s. 627–631.
[2] C. Montiel-Nava, J. Pena, E. Mora-La Cruz, Cognitive functioning in children with multiple sclerosis, “Multiple Sclerosis” 2009, nr 15(2), s. 266-268.
Text: Iza Czarnecka
Source: Positive Impulse