Since narcolepsy in children is a genetic disorder, parents 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 on symptoms. Pediatric narcolepsy is a rare condition that can have a profound impact on a child’s physical, emotional, and social well-being. In this article, we will explore the key aspects of narcolepsy in children, including child narcolepsy symptoms, causes, treatment, and the support available for affected families.
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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 of narcolepsy in their children.
If the children with narcolepsy are not identified and the child does not receive help, their grades will 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 in kids.
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.
Treatment of Narcolepsy in Children
All drugs used for pediatric narcolepsy treatment are orphan drugs. They were developed for other purposes but have been found useful in treating the symptoms of narcolepsy in children. No drugs have been developed specifically for narcolepsy disorder. Although a drug is not indicated for treating a certain condition, a doctor may prescribe any medication he believes to be in the best interest of the patient.
Treatment options for pediatric narcolepsy often include a combination of medications and behavioral interventions. Stimulant medications, such as modafinil or methylphenidate, can help promote wakefulness during the day, while antidepressants may be prescribed to manage cataplexy and other associated symptoms.
The following is a generalized guide to the most commonly used medications for the treatment of narcolepsy in children. Recommended dosages vary greatly. The current approach is to use lower dosages.
Central nervous system (CNS) stimulants used to treat excessive daytime sleepiness and automatic behavior:
Ritalin is available at 10-60mg/day.
- Dextroamphetamine (Dexedrine) 5-60mg/day.
- Methamphetamine (Desoxyn) is not generally prescribed at 15-80mg/day.
Stimulants used to treat excessive daytime sleepiness (EDS) and cataplexy Mazindol (sanorex) are less useful for severe narcolepsy. 4-8mg/day in divided dosages.
Antidepressants used to treat cataplexy, hypnagogic hallucinations, and sleep paralysis:
- Protriptyline (Vivactil) 10-40mg/day non-sedating may improve EDS if associated with a stimulant.
- Imipramine (Tofranil) 25-200mg/day
- Desimpramini (Norpramin) 25-200mg/day
- Clomipramine (Anafranil) 25-200mg/day
- Fluoxetine (Prozac) 20-60mg/day
Note: With the exception of fluoxetine, all antidepressants listed are tricyclic antidepressants (TCAs). Most TCAs have a sedating effect and should be taken at bedtime to avoid worsening excessive daytime sleepiness (EDS) and stimulant interaction.
(Some people find it necessary to be taken during the day to control cataplexy). Should not be stopped abruptly due to the possibility of rebound cataplexy and should not be taken in combination with monoamine oxidase inhibitors (MAOIs) or other antidepressants. It May cause worsening of periodic limb movements of sleep and impotency problems.
Warning: Prazosin, used to lower blood pressure, reportedly has produced \dangerous side effects for narcoleptic patients using Ritalin and Vivactil.
Monoamine Oxidase Inhibitors (MAOIs) are not usually recommended due to potentially hazardous reactions.
- Phenylzine (Nardil) may be useful in treating difficult cases of narcolepsy cataplexy.
- Selegiline (Eldepryl) has none of the tyramine-related side effects and may be useful in treating excessive daytime sleepiness (EDS).
Sedative/hypnotics (to be taken at bedtime)
- Temazepan (Restoril) 15-30mg
- Triazolam (Halcion) 0.125-0.25mg
- Flurazepam (Dalmane) 15-30mg long lasting
- B.Barbiturates not usually prescribed
Warning: Should not be used if apnea is present. Do not take alcohol; do not drive while under the influence of hypnotics.
Note: Information on drugs included here is intended only as a source of general information. Consult your doctor or pharmacist before taking any medications.
What Causes Narcolepsy in Children
Research on narcolepsy in children, conducted primarily in university and hospital-related facilities, continues to research for the causes and ultimately a cure for the disorder. The major areas of focus are:
Familial Trait (Inherited)
Narcolepsy in children is a genetic disorder. The predisposition for narcolepsy can be inherited. Anyone diagnosed with narcolepsy should make information available to relatives and attempt to determine if other members are affected. Medical genealogy can be an important factor in identifying families affected by disorders of excessive daytime sleepiness (EDS). EDS appears more frequently in families than dose narcolepsy.
For a first-degree relative of a narcoleptic, the risk of developing some disorder of excessive daytime sleepiness (EDS) is eight times greater than for the general population. The method by which the predisposition to inheriting narcolepsy is transmitted is unknown, but research is shedding some light on the subject.
Genetic Component
It appears there might be several genes that predispose a person to narcolepsy. A person with one or more of these genes might develop narcolepsy, whereas a person without any of the narcolepsy genes will nit develops it.
Environmental Factors
Whether or not someone with a genetic predisposition to narcolepsy will develop it depends upon a wide range of environmental factors. Particular factors, which may be different for each individual, have not been identified. In general, viruses, bacteria, chemicals, and even psychological stress are suspect.
Genetic Markers for Narcolepsy
Almost everyone who has narcolepsy has a specific blood type known as HLA-DR2. HLA stands for Human Leucocyte Antigen, a family of proteins critical to the immune system. The DR2 gene is a key component of the HLA system that controls the body’s immune defenses. Most people with DR2 have the closely related gene DQB1-0602 which is actually a better marker for narcolepsy.
Although an estimated 20-30% of the general population carries DR2 and/or DQB1-0602, only a tiny fraction will ever develop narcolepsy. Research theorizes that other unidentified genes and probably environmental factors are needed in addition to the HLA factors to cause the onset of narcolepsy. The high correlation between the DR2 and the DQB1-0602 genes and narcolepsy suggests they code for a predisposition to the disorder. This association also suggests narcolepsy may be an autoimmune disorder.
Neurotransmitters
A million neurons (brain cells) communicate with each other by means of chemicals called neurotransmitters. If any part of this complex system of sending and receiving messages is not functioning properly, the desired action will not take place.
Research studies suggest the brain may be hypersensitive to the neurotransmitter acetylcholine, which is important in the control of REM sleep. Other biochemical studies involve neurotransmitters called monoamines (dopamine, norepinephrine, and serotonin), which are important for the regulation of sleep, arousal, and alertness. Stimulants and antidepressants are thought to work by enhancing the effects of these neurotransmitters.
Research on monoamines and how current narcolepsy drugs act on them may lead to the development of better treatments. Ultimately, however, the discovery of the genes that initially produce the acetylcholine and monoamine imbalances could result in finding a total cure for narcolepsy rather than a treatment that only reduces the symptoms of the disorder.
Autoimmune Hypothesis
Although there is no direct evidence to support the hypothesis, factors (such as the HLA-DR2 marker) suggest narcolepsy might be an autoimmune disorder. The body’s immune system provides protection against foreign objects. Occasionally, for some reason it attacks its own tissue, usually causing signification damage. Hypothetically, in narcolepsy, the area in the brain that controls the sleep/wake processes could be damaged as a result of this kind of immune attack.
