Narcolepsy: how to recognize the signs in your child?

Does your child have difficulty concentrating? Or maybe he sometimes falls asleep in class? Certain signs should alert you, as the awareness campaign led by the French Association of Narcolepsy Cataplexy and Rare Hypersomnia (ANC), with the Bioprojet laboratory, reminds us.

Narcolepsy, a disease that mainly develops during adolescence

“Narcolepsy is a disease of the central nervous system characterized by dysfunction of sleep/wake regulation.”, recalls the press release of this campaign. Its main manifestation? An irrepressible need to sleep, whatever the time of day. This can even happen during full activity. At night, sleep is often disturbed, “with rapid access to paradoxical sleep after falling asleep”.

It is a rare disease that usually begins around age 15, but for 10 to 15% of patients, it can begin before age 10.

Symptoms of narcolepsy

“In its most common form, cataplexy narcolepsy or narcolepsy type 1 NT1, is associated with cataplexies, that is to say episodes of loss of muscle tone, which can affect the entire body, with a risk of sudden fall, or only part of it – we then speak of partial cataplexy.“For two thirds of pediatric patients, that is to say sick children and adolescents, cataplexy is associated with narcolepsy,”with manifestations that can be disconcerting for those around you – family, teachers, classmates – such as relaxation of facial muscles, which can lead to involuntary opening of the jaw, accompanied by unusual protrusion of the tongue”.

Other signs may also attract attention, such as:

1. rapid weight gain at the start of the disease;
2. drowsiness;
3. hypnagogic (when falling asleep) or hypnopompic (when waking up) hallucinations;
4. hyperactivity, particularly present in children, developed to compensate for the desire to sleep;
5. cognitive disorders including difficulty concentrating;
6. metabolic disorders.

Finally, narcolepsy can also be associated with the onset of early puberty (before age 10). All these symptoms appear within a few weeks or even months. However, the diagnosis is often long, with medical wandering which can last around ten years.

“As in adults, the diagnostic time is long in children. Indeed, frequent falling asleep, during childhood or adolescence, is something that is not necessarily seen as pathological.explains Manon Brigandet, president of the ANC. Because we are growing, because there is often misuse of screens. And that tends to delay the diagnosis because we’re not going to pathologize it. Sleep, drowsiness, is more associated with healthy lifestyle rather than pathology. This is normal, of course, but it is important to make it known that behind frequent and common symptoms there may be an illness.”

My child is narcoleptic, what should I do?

The longer the diagnosis, the more significant the repercussions on the child. So once you have identified the signs of narcolepsy, you should contact a healthcare professional. The latter will be able to make the diagnosis using a series of examinations based on clinical signs and on the recording of electrical brain waves during falling asleep, sleeping and waking up. “Sometimes a blood test is done to look for genetic markers of predisposition to narcolepsy-cataplexy”, details the Vidal.

This chronic illness cannot be cured, but the symptoms can be reduced by implementing personalized support including a regular sleep schedule, appropriate physical activity, the possibility of taking naps and medication treatment.