16 Jun Kady’s Daily Fight- My Daughter’s Life with Narcolepsy
Happy and carefree for most of her early years, Kady loved playing with her dogs and My Little Pony. Her mother, Angie, always noticed that Kady was a sleepier child than other kids but didn’t really notice excessive sleepiness until Kady entered kindergarten at 5 years old. Angie said that Kady would nap during her kindergarten classes and then come home and want to sleep some more.
In first grade, school became even more difficult for Kady. She would fall asleep every day during class and when her teachers woke her up, she would become angry and throw tantrums. The situation escalated to her being punished by her frustrated teachers. Many times they sent her into the hallway and made her pick up 50 pencil top erasers one by one. If she threw another fit, they would make her start all over again. Other students would make fun of Kady and she would get mad and want to fight back. The mistreatment from both the teachers and the other students often made Kady cry at school and when she came home. Angie decided enough was enough and pulled Kady out of the school, angry about the treatment her daughter received and frustrated about Kady’s continued excessive sleepiness that seemed to be getting worse instead of better.
Angie took Kady to the pediatrician for a year before Kady was officially diagnosed with narcolepsy. Her pediatrician did say he thought it could be narcolepsy but he needed more time to study her symptoms. After many appointments and two sleep studies, she was diagnosed with narcolepsy when she turned 8 years old.
After being diagnosed, Kady started taking medication which helps but she still struggles daily to keep up in school and with her peers. Her doctor wrote a prescription for her to be allowed to take naps at school, a necessary accomodation for someone with narcolepsy. The school district initially rejected the request for naps, but finally relented after receiving the prescription from Kady’s doctor and hearing about the severity of her condition from Angie. The naps, helpful as they are, cause Kady to miss reading, writing and sometimes mathematics, and when she wakes, she has to work twice as hard at her studies just to keep pace with others in her class.
While most parents would most likely agree that waking their children for school is not exactly pleasant, Angie describes the process of waking Kady as exhausting. Angie has to physically drag her from the middle of the bed to the edge of the bed, all the time calling her name and telling her it’s time to get up. After that, Angie has to grab Kady’s hands and pull her into a sitting position and start dressing her daughter, who is still basically asleep. “After all that, I’m already tired before the day gets started,” Angie said.
In addition to having narcolepsy, Kady also has Autism and Atypical Absence Epilepsy, which all require some form of medication. Kady complains every day when she has to take six different medications, which she always says is “too much” and asks repeatedly why she has to take them.
The napping, the medication and the morning waking process prove to be challenging as Angie navigates being the mother of someone with narcolepsy but the scariest aspect so far is Kady’s nightmares and hallucinations. Often dark and frightening, she talks about seeing scary animals and being someplace where she’s all alone. When she gets up the courage to tell Angie what the nightmares are about, Angie said some have even scared her and it breaks her heart to see her daughter go through such a disturbing experience. Some nights, Kady will come into Angie’s room and sleep with her after one of her nightmares. Occasionally, Kady will also have sleep paralysis and Kady can see her eyes roll back in her head and her body go limp.
Being Kady’s mom means being her advocate and her ally, which leads to opportunities to educate people about narcolepsy. Angie said that everyone who comes in contact with Kady, from teachers and students to her own family members, gets informed about this devastating sleep disorder. As for getting support and feeling a sense of community, Angie said she attends support groups with other parents who are trying their best to raise their children living with narcolepsy and/or autism. “It’s a place where I feel safe to vent my frustrations about narcolepsy and people will understand,” Angie said.
Angie said that she does have a positive attitude, despite the constant challenge that narcolepsy presents in their family. She said she encourages people who have a child with narcolepsy or living with narcolepsy themselves to do as much research as possible. “Knowledge is power,” she said.
Angie said movie portrayals of people with narcolepsy are often false and misleading and she regrets not knowing the symptoms of this disorder sooner. She also said she wants people to know that people with narcolepsy are not “lazy.” Narcolepsy keeps a person from getting quality sleep. Narcolepsy keeps a person from getting the deep restorative sleep people get when they don’t have narcolepsy. People with narcolepsy go into REM sleep usually within 5 minutes or less and people without narcolepsy take up to 90 minutes to got to REM sleep.
To a person with narcolepsy, naps are a necessity, not a luxury.
Right now what gives Kady hope is knowing that she isn’t the only person with narcolepsy though she is the only one in her school that has narcolepsy. For parents with a child who has narcolepsy, Angie’s advice is to do research and have a wonderful relationship with your child’s sleep specialist. Educate anyone that has interaction with your child and find a support group for parents of children with narcolepsy.