Since narcolepsy is a genetic disorder, a parent should be the ones to detect any symptoms that develop in their children. Unfortunately, many parents who have narcolepsy are still searching for a correct diagnosis of their symptoms.
Difficulties with the diagnosis assignment
The first problem is a lack of knowledge of all disorders of excessive daytime sleepiness and difficulty in getting a correct diagnosis. The second is that families are largely unaware that disorders of excessive daytime sleepiness (EDS) are inheritable. Thirdly, even if someone has been diagnosed with narcolepsy or some other excessive daytime sleepiness (EDS), they frequently fail to contact other family members (grown children, siblings, aunts, uncles, and cousins) to inform them of the potential for others having or developing some form of excessive daytime sleepiness (EDS). Consequently, families don’t know to be on the lookout for signs in their children.
When narcolepsy does occur in children, teachers are often the first to observe the symptom of excessive daytime sleepiness (EDS). Unfortunately, teachers are often antagonized by students sleeping in class. If they are not knowledgeable about narcolepsy, a teacher may attribute sleeping in class to a variety of other reasons, such as not enough sleep at night, laziness, stupidity, disinterest in schoolwork, etc. Children’s effort to overcome sleepiness may be misunderstood and labeled as behavior problems.
If the problem is not if identifies and the child does not receive help, grades ill begin to drop. Subsequently, a pattern of failure and lowered self-esteem begins to develop. Perhaps this is the saddest of all the consequences of narcolepsy.
If the parents are notified their child is sleeping in class, they should make an immediate effort to determine the cause. If a diagnosis of narcolepsy is made, they need to report this information to the school and schedule appointments (jointly if possible) with all teachers, the school counselor and the school nurse. It is the parent’s responsibility makes sure school personnel understand their child’s symptom and how they can affect behavior and grades. However, if the parent cannot or will not assume the responsibility, a teacher or counselor must follow through with appropriate action.
Ask for teacher staff cooperation is assuring your child gets any additional help and/or special considerations that may be necessary. This pertains to extracurricular activities as well as coursework. All concerned adults need to monitor the child’s interactions with others be sure social adjustment is progressing satisfactorily. If it becomes apparent this cooperation is lacking or school authorities have some doubt regarding your child’s disabilities due to narcolepsy, the attending physician may need to intercede on behalf of the student. The counselor especially needs to be aware of the psychosocial aspects of narcolepsy.
Children are bombarded with other problems in addition to their learning difficulties. They are embarrassed by being different from their peers and likely will make vain attempts to hide their condition. Or they may make up stories in an effort to explain their sometimes odd behaviors. They are likely frightened by their symptoms and unable to understand and accept them. They may be especially terrified if they experience hypnagogic hallucinations, sleep paralysis and/or cataplexy. These are experiences which even their parents cannot understand.
A support group, or even one other individual who has narcolepsy, can be extremely helpful in reassuring the child. A professional counselor, who understands narcolepsy, can help the child to make the many difficult adjustments demanded by the disorder.
Career counseling is crucial for children and young people with narcolepsy. The basis for future plans must be laid early through an understanding and acceptance of the fact that there are certain limitations imposed by the disorder. Occupations in which excessive daytime sleepiness (EDS) and/or cataplexy might prove to be potentially hazardous to themselves and /or others should be ruled out. Such job style might include airline pilot, air controller, surgeon, truck driver, heavy equipment operator, and high risen construction worker. Active duty police workers and firefighters are other risky occupations.
Hopefully, symptoms could be controlled sufficiently to allow the performance of any type of work. Realistically, such might not be the case. Or a person may have only mild excessive daytime sleepiness (EDS) when deciding on a career only to find that the symptom worsens or that cataplexy develops at a later date.
It is far better for young to face reality and work toward a suitable profession than it is for them to meet failure or rejection after years of preparation in the wrong field. If good viable employment alternatives are offered and young people receive the support and encouragement they need, it should not be a big problem.
One of the biggest priorities for all those concerned with narcolepsy at any level should be ways of identifying narcolepsy when it exists in young children. The sooner it can be diagnosed and treated, the better adjusted and more normal their lives will be. Children are probably the most victimized by the disorder. Many are doomed to a lifetime of failure unless they get the help they need. Otherwise, they must struggle desperately against the odds to succeed.