Gabriel Manos’ son suffered baffling symptoms for 7 years before his doctor diagnosed him narcolepsy At the age of fifteen. Before that, he would sleep in class, nap in the car, and take frequent naps despite getting enough rest at night. “We took his test, and he went from being on academic probation to being on the dean’s list,” Manos says.
Through her support, activism, and determination to teach others, Ibn Manos is now succeeding academically and socially in college. “The most important thing you can do for a child is to become an advocate for the facilities…and fight for your child,” she says.
Narcolepsy is a disorder that affects the brain’s ability to control sleeping and vigilance. Without proper treatment, it can get in the way of school and your child’s social and personal life. It is important that you learn ways to support your child as they navigate life with a nervous condition.
Understanding your child’s diagnosis
As with any condition, it is important to understand how your child’s symptoms will affect his or her life. Narcolepsy caused the son of Manos to suffer at school, losing his energetic and energetic personality, coping with cataplexy, a sudden and brief loss of muscle tension.
About 70% of children with narcolepsy have cataplexy. Powered by Stress or strong feelings and can cause a short weakness in the knees, eyes, jaw or more severe symptoms such as paralysis with the collapse.
Your child may also have symptoms such as:
Excessive daytime sleepiness (EDS). “Excessive daytime sleepiness is the most common presenting symptom,” says Kieran Maski, MD, a pediatrician. neurologist And sleeping Medical Specialist at Boston Children’s Hospital.
“Almost every patient with narcolepsy has EDS as the primary complaint.” This is usually the first sign of narcolepsy in children and may affect your child during quiet moments, such as in class, while reading, or while riding in a car.
sleep paralysis. This happens when you are unable to move or speak right before bed or right after you wake up. These seizures usually stop within a few seconds or minutes.
Interrupted sleep at night. Some children may have difficulty sleeping through the night due to constant awakening.
automatic behaviours. Your baby may sleep for several seconds but continues to perform routine tasks, such as writing. Despite this, they will not have any memory to do these tasks.
overweight. This is a symptom and warning sign of childhood narcolepsy. It is common in the early part of the development of narcolepsy. At least 25% of children with this condition are obese.
early start for puberty. If your child has narcolepsy, he may start puberty earlier than most children.
But some of these symptoms are not frequent. “Other symptoms such as sleep paralysis, hallucinations, or disturbed nighttime sleep may appear more varied in children,” Masky says. They may have one or two episodes of sleep paralysis, but it is not a chronic problem on a weekly basis. …disturbed sleep at night is usually something where they wake up but fall back to sleep very quickly. They may not realize this as a problem.”
Understanding your child’s symptoms will allow you to take effective care of him. “That’s what you have to do. You have to be strong, you have to do your research, you have to be able to stand up for your child,” says Manos.
How does narcolepsy affect their lives?
Ann Taylor’s daughter was 13 years old when they found out that she had a sleep apnea. Before that, doctors tested her for different conditions to determine what symptoms she had. But for years, they couldn’t understand what was wrong.
“She tested for auditory processing disorder and got into special education. It helped a little bit, but she was still having a hard time with it,” Taylor says. “In the third grade, she started falling asleep at school. The teachers would ask her to walk around a table to get her up. This of course made her stand out from the group of friends. It made her feel different.”
By the time Taylor’s daughter was 11, she started gaining weight. “Within a year, she had a massive weight gain of 30 pounds, which is a lot for a young child,” she says. “She started becoming a teenager. Psychologically for the girl at this time it was really difficult. She became more and more isolated.”
For Taylor’s daughter, it was hard to keep up with friendships. “It was really hard for her to connect with other friends at school because she just had to use all her energy trying to stay awake,” Taylor says.
Taylor says it was hard to watch. “I could see my baby fall in front of me to shreds. I couldn’t really do anything. I didn’t know what it was.”
Fortunately, after her daughter received the proper diagnosis, Taylor and her husband were able to help their daughter reach her potential. “Once we finally got to the right Drugs She has improved greatly and is thriving. … She would not have reached what she is today had it not been for the special education teachers who surrounded her.”
How to support your child in case of narcolepsy
There are several things you can do to help your child even after diagnosis and treatment:
Find the right medication. “There are quite a few classes of drugs that we use,” says Anuja Bandyopadhyay, MD, a pediatric sleep specialist and pulmonologist at Riley Children’s Hospital in Indianapolis.
“I usually have a good conversation with families about the types of drugs and what their side effects are. The first line is usually the use of stimulants. … If that doesn’t work, the next option is to use a drug to promote alertness. These also have had very good benefits. If The patient has primary cataplexy, we will have some options.One of them uses Antidepressants. “
Your doctor may prescribe it for your child amphetamine stimulants like methylphenidate (Ritalin). They may also suggest a drug to promote wakefulness such as armodafinil (Nuvigil) or Modafinil (Provigil).
Sodium oxybate (zerm) is the only FDA-approved drug for both daytime sleepiness associated with narcolepsy and sleepiness in young children. But your doctor may also treat your child’s cataplexy with antidepressants, such as:
inform their schools. “For many children (who have narcolepsy), I can easily see how they would be labeled lazy. From not wanting to focus, not responding to the teacher, and not being able to participate in the class social group. But these can be some of the signs and symptoms of narcolepsy. Taylor says. “I hope by talking about this, more people will know what narcolepsy is.”
To help teachers understand your child’s condition, it is best to educate them yourself. “The best thing I can say to parents is to bring all the information,” Taylor says. “Copy it for every teacher in the meeting. … Get in touch with the Special Education department as the school year begins. The more we teach about our child’s illness, the easier it will be for us to teach others.”
be realistic. “As parents, we have to adjust our expectations for our children. … My expectations of him at school are different,” Manos says. Narcolepsy is a lifelong sleep disorder, but the condition does not get worse with age. If you set manageable goals for your child, he will be able to succeed and improve his symptoms over time.
Talk to a therapist. Narcolepsy is a chronic disease. There is no cure. “Be sure of it [your children] Understanding that and having the resources to deal with a chronic condition is really important,” says Masky. “Whether it’s a guidance counselor, a local psychologist, or a cognitive behavioral therapist, these are very valuable resources to be able to provide for children.”
Help them find peers. “It’s very helpful to join support groups,” says Miski. There are a number of advocacy groups such as Wake Up Narcolepsy, Narcolepsy Network, Project Sleep, and the Hypersomnia Foundation that have amazing resources. At the local level, ask the doctor if there are other patients to meet or a local support group.”
Encourage naps. Schools sometimes give the opportunity to take a 30-minute nap. when [your child] At home, they can take a 30-minute nap,” says Bandyopadhyay. These naps can help your child stay fresh and reduce drowsiness for a few hours.
stay active. “One of the things I found very useful Playing sportsAnd [my son] Manos says. Normal Playing sports At least 4 to 5 hours before bed time It can help children feel more alert during the day and sleep better at night.
Get enough sleep. Your child should follow a regular bedtime and wake up schedule. This will help them establish a routine and get maximum sleep each night.
Limit caffeine. It is better to stay away from caffeine And other stimulants later in the day. “We know that although the patient is drowsy due to narcolepsy, some of these children can also have narcolepsy. Insomnia at night. And when that happens, it shortens their sleep time even more. It’s a vicious cycle, says Bandyopadhyay. caffeine In the evening it will only continue to impede sleep.
Make sure they are safe. Keep your child out of situations such as driving, cooking or swimming If they lose vigilance. Make sure your child is fully awake and alert before he does anything potentially dangerous.