The rare sleep disorder often confused with epilepsy or psychiatric illness. The delay in diagnosis has serious repercussions on social and school life. How to recognize it
Recognize i alarm bells from the narcolessia
rare and chronic sleep disturbance the key to getting to one quick diagnosis and avoid long pilgrimages to specialists of all kinds. Unlike what was thought years ago, pediatric-onset disease with a peak of onset in adolescence. Symptoms are simply not recognized in children and therefore it can take years before a diagnosis is reached, and therefore a correct therapy, with a psychological impact on family, school and social life that can be devastating, he says. Lino Nobilifull professor of child neuropsychiatry at the University of Genoa and head of the child neuropsychiatry unit at the Gaslini pediatric hospital in Genoa.
I sintomi
the narcolepsy one neurological pathology characterized by ainability of the brain to physiologically regulate the sleep-wake rhythm
. Narcoleptic patients enter the REM phase in a sudden and atypical way. The two most characteristic symptoms of the disease areexcessive daytime sleepinesswith uncontrollable sleep attacks and the cataplessia
that is theat loss of muscle tonewhich can lead to falling to the ground without losing consciousness, caused by sudden emotions, usually pleasant, such as the excitement of a video game, a laugh or the surprise of an unexpected kiss. Other symptoms are hallucinations with vivid, often frightening visions perceived during falling asleep or waking up, sleep paralysis lasting a few seconds, in which you cannot speak or move, disturbed night sleep.
The two most classic signs, excessive daytime sleepiness and cataplexy present for very particular characteristics in pediatric age. The child may fall asleep, usually for a short period, in situations that are anything but boring or even increase the number of hours of sleep per 24 hours. Moreover at school he may manifest inattention, irritability or hyperactivity.
La narcolessia pu show up quickly, within a few days or at most a few weeks underlines Nobili. In a situation where a parent notices that their child resumes their abandoned afternoon nap months earlier, they fall asleep unusually very early in the evening and begin to increase total hours of sleep, or if they fall asleep several times throughout the day, even during fun experiences, further diagnostic recommended.
The psychological implications
Cataplexy in childhood and adolescence – underlines Nobili – often presents itself as loss of tone of the muscles of the face, the so-called “cataplectic facies”, ie the intermittent presence of a drooping expression on the face, with half-closed eyelids, open mouth, protrusion of the tongue, grimaces, drooping bust. It is undoubtedly an expression that creates discomfort, children can be teased and find themselves isolated; However they do not have any cognitive deficits
.
In addition, the very young narcoleptics sometimes manifest clumsiness in the movements (they swing, they can repeatedly move their limbs or hands). It is most likely about countermeasures to combat sleepiness. Finally, other typical signs of younger children are the early puberty elsudden weight gainup to obesity.
Misdiagnosis
Narcolepsy can be confused with epilepsy, psychiatric illness, encephalitis, attention deficit disorder, depression, even with degenerative muscle diseases and is consequently treated with the wrong drugs. If up to the 2000s it took up to 20 years to give a name to the disorder today, thanks to new knowledge about the disease and the many information campaigns, it takes on average between 5 and 7 years to arrive at a diagnosis.
Still too many for kids who, in addition to the daily difficulties at school, see themselves branded as lazy and listless, sometimes victims of bullies or teachers who do not understand their daily difficulties. Some teenagers tend to isolate themselves to avoid finding themselves in situations in which they could get excited, finding themselves undergoing cataplectic episodes. Hallucinations, which can be terrifying, are often confused with nightmares in children’s stories, and for toddlers it can be difficult to distinguish hallucinations from reality.
The therapies
After many years of research, the cause of narcolepsy was identified in the year 2000. Illness due to destruction of neurons of the lateral part of the hypothalamus they produce orexina
, a substance necessary for staying awake, regulating sleep-wake balance and REM sleep. This destruction probably occurs due to an autoimmune mechanism.
The irreversible damage, there is no cure for narcolepsy. However they exist drugs that work effectively on your symptoms and they can guarantee an excellent quality of life. At the moment only psychostimulants (still off-label for children) that act only on drowsiness are reimbursed, while drugs that also act on cataplexy, present in two thirds of narcoleptics, are not yet reimbursed by the health service and patients can have considerable problems in accessing expensive therapies because each region, even each local health authority, follows different procedures.
The most effective non-drug strategy consists of short restorative naps that allow you to stay fit for a few hours, even if alone they are often insufficient to control daytime sleepiness. They are strategic and can be extremely effective. For each patient the rhythm and duration must be established, also based on the possibility of carrying them out, suggests Nobili.
In the classroom
The big problem for students is the school itself. Although apparently awake, drowsy, narcoleptic students may present automatic behaviors, like writing nonsense or out of line words. For them there are no standardized help as happens for dyslexic students, but everything depends on the good will of the individual teachers, of the specialists who go to explain the pathology of their young patients and how much the principals are available to understand and accept the idea of nap as therapy. Often, however, it is the same students who do not agree to sleep in class for fear of being made fun of. Who succeeds because he has found a good school environment, with real friends who are able to understand them. But in general organizing at school is anything but simple. Small tricks can make a difference such as, for example, prefer oral questions or provide photocopies of notes taken by classmates or by the teacher to counteract the slowness of taking notes. Or, on the part of the teachers, to foresee shorter exercises or accepting late submissions based on the amount of tasks assigned.
March 21, 2022 (change March 21, 2022 | 18:03)
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