SWHR spoke with Tammy Anderson, an advocate and volunteer with Wake Up Narcolepsy, about her journey caring for her child with narcolepsy. The following blog post captures takeaways from the conversation. This interview took place as part of SWHR’s Narcolepsy Program.
Narcolepsy is a chronic neurological disorder that affects the brain’s ability to control wake-sleep cycles. It’s characterized by overwhelming daytime drowsiness and sudden attacks of sleep. While narcolepsy can occur at any time in life, symptoms often start in childhood, adolescence, or young adulthood (ages 7 to 25).
Given the early onset of narcolepsy, parents and guardians who have a child with narcolepsy may find their responsibilities and expectations have expanded, and that they are serving in the dual roles of parent and caregiver. All parents provide care for their children; however, when long-term medical care enters the equation, parental roles often transition into a more formal caregiver role that presents more complex day-to-day responsibilities. The Family Caregiver Alliance defines caregiver as an “individual involved in assisting others with activities of daily living and/or medical tasks.” Caregiving, while rewarding, can also present challenges, including emotional and physical strain. As women account for an estimated 66% of caregivers, it is important that their stories and experiences be highlighted.
Tammy Anderson’s daughter, Hero, first began showing symptoms of narcolepsy at age 9, but it would be another two years before she received her official diagnosis and began treatment.
Anderson first noticed how much more Hero was sleeping than her other children. She was restless at night, would take multiple naps during the day, and would fall asleep during movies and while doing schoolwork. At first, Anderson thought Hero’s excessive drowsiness might be the result of a growth spurt or some kind of cold, but it wasn’t long before Anderson, who at that time was a mother of six, knew it must be something more.
Anderson and her husband first consulted with Hero’s pediatrician, who suggested Hero might be under-stimulated and needed to move more. However, when additional doctor’s visits and physical stimulation weren’t improving Hero’s sleep patterns, she was sent to a sleep specialist, who said Hero’s sleepiness could be anything from an iron deficiency to narcolepsy; a sleep study was the only way to make a conclusive diagnosis. Since Hero’s iron levels, which can affect energy levels, were low, Anderson and her husband first started Hero on iron therapy. While it was the least invasive treatment option, iron therapy is a months-long process, taking time to gauge progress.
Despite some early optimism that the iron therapy was working, it wasn’t long before Anderson and her husband realized Hero’s symptoms were still present. It was then that they took Hero in for the sleep study. Hero’s sleep study involved her sleeping in a clinic through the night and taking five naps the following day. Her results revealed that Hero slept all night, mostly in a REM cycle, and in each of her naps, she fell asleep in as little as 30 seconds and went straight into her REM cycle in four out of the five naps. It was then that Hero received her narcolepsy diagnosis.
Managing Narcolepsy Care for a Loved One
At 16 years old, Hero now primarily manages her narcolepsy, but at the time of her diagnosis, Anderson was responsible for managing Hero’s narcolepsy day-to-day. According to Anderson, because narcolepsy care centers on structure, preparation is key to effective management:
- Medications Schedule. Hero’s first narcolepsy medications had to be taken morning, afternoon, and night with one scheduled nap each day. For Hero, that usually happened after lunch. Anderson was responsible for ensuring that none of the medications were missed and that the nap schedule was adhered to.
- Thinking Ahead. Travel or changes to the family’s schedule that took them away from home required Anderson to think ahead about finding a safe, quiet, and comfortable place where Hero could nap. So, whether the Anderson family is out around lunchtime or is moving across the country, Anderson is constantly weighing what is feasible for Hero and how she can best accommodate her sleep schedule.
- Night Routine. For individuals with narcolepsy, achieving optimal sleep involves going to sleep and waking up around the same time each day. For a family with young children, this required a lot of structure in the Andersons’ nighttime routine, particularly because they wanted to find balance with their other children’s schedules to ensure that the routine seemed fair for everyone.
- Incorporating Buffer Time. Anderson continues to add in as much buffer time into Hero’s schedule as possible. She wakes Hero up long before they need to be somewhere to minimize stress. As she described it, particularly in the early childhood years, it can be overwhelming for a tired child to feel like adults are rushing them and constantly trying to get them to different places; often, they don’t know how to react other than to break down in anger, sadness, or frustration.
These challenges represent only part of those that Anderson and her husband navigated. Another challenge related to the time spent providing care, which was exacerbated by the Andersons living in a more rural area. When Hero was first diagnosed, her doctor lived more than an hour away. Each time she had an appointment, it was a three and a half hour time commitment. Further, early in her diagnosis, when Hero was also seeing a pulmonologist and a neurologist, Anderson would set entire days aside for all of Hero’s appointments in an attempt to maximize their travel time into the city. At home, it initially took Hero longer to do her school work, and Anderson would sit with her until it was completed to keep her on task.
Care Considerations for Type 1 and Type 2 Narcolepsy
Providing care for someone with narcolepsy may also look different depending on whether the individual has type 1 or type 2 narcolepsy. Type 1 narcolepsy is based on the individual either having low levels of a brain hormone (hypocretin) or reporting cataplexy, the sudden loss of muscle tone while a person is awake, and having excessive daytime sleepiness on a special nap test. Those with type 2 narcolepsy experience the excessive daytime sleepiness, but have a normal level of hypocretin and usually don’t have muscle weakness triggered by emotions.
For those with cataplexy, activities such as swimming and being around fire can be dangerous. There are also special considerations related to driving. While Hero’s cataplexy is minimized with medications, the Andersons are taking a careful approach to her driving to build her independence in a safe way. Their approach involves keeping Hero’s drives short (around 10 minutes) and stimulating; prohibiting her driving around lunchtime (when she usually naps); and finding public transportation options for places that are farther away.
Supporting Families Navigating Narcolepsy
Anderson shared the value she places in her support system, including her and her husband’s families, friends, neighbors, and church leaders. A key piece of that support system, she shared, is people’s willingness to include Hero in outings and activities and those who go out of their way to keep Hero’s routine as normal as possible:
“I think that’s the biggest support for me – knowing that someone is willing to make the accommodations to let her come along and participate. There’s not much that people can come do for her or for me that relieves that stress, but knowing that they’re not going to exclude her because it might be inconvenient…is the biggest support that we can get.”
Another critical source of support for Anderson has been Wake Up Narcolepsy. Anderson shared that Wake Up Narcolepsy is not only where she found her greatest online support, but also where her family—through the organization’s Camp for Children with Narcolepsy and Families—was able to gain a greater understanding of Hero’s diagnosis. Anderson also referenced the value she found in Claire Crisp’s narrative, “Waking Mathilda: A Memoir of Childhood Narcolepsy,” for piecing Hero’s diagnosis and their experiences together.
When asked about what she wished others knew about caring for a loved one with narcolepsy, Anderson shared her desire for a greater understanding of how tired those with narcolepsy actually feel, particularly given that narcolepsy is an invisible condition: “I wish that people could see what a day for Hero is like – that they could see how tired she is.”
Anderson noted that a lot of people with narcolepsy are seen as lazy or unmotivated and that oftentimes people fail to grasp how much energy and effort it takes for those with narcolepsy to be involved in certain activities—how difficult it may be for someone at any given moment.
For that reason, she shared the importance of people with narcolepsy to advocate for themselves and their needs.
Closing the Gaps: Improving Narcolepsy Support and Resources
For parents caring for a child with narcolepsy, Anderson shared that some of the challenges may include feelings of not being heard, a desire for more discussion and support, and a need for additional resources.
She shared that when it comes to childhood narcolepsy, providers often dictate a plan of care. “As a mom,” she said, “you want to be making choices for your child.” She said it would be helpful to have more resources for parents to learn and educate themselves so they can feel empowered to make decisions along with their child’s health care provider. She also said it would be helpful to have information on research (especially about narcolepsy medications and their effects over time) presented in a way that’s digestible to the general public.
Anderson also noted that narcolepsy caregivers would be well-served by additional opportunities for support:
“You move through the motions of taking care of your child without addressing the concerns that you have. I think it would be helpful to have more opportunities to talk about how you’re feeling about this diagnosis that’s going to change everything… We do carry it. A lot of times we hide it because you’re the mom and that’s what you have to do. You have to take care of [your kid] and if you stop to think about what’s actually happening, it’s overwhelming.”
She suggested making social workers or counselors available to those who receive or are actively caring for someone with a narcolepsy diagnosis, connecting families to support organizations and other groups, or directing them to specific resources and information. Each of these could help families leaving the doctor’s office to feel “empowered, instead of afraid.”
Advice for Parents
When asked what advice she would offer to other parents navigating their child’s narcolepsy diagnosis, Anderson encouraged them to find a doctor who knows about narcolepsy, even if it means they have to travel. Beyond that, she encouraged parents to trust their instincts and not to be afraid to try new therapies and treatments. Anderson said that while fear initially stopped them from putting Hero on a certain medication due to its potential side effects, once she went on it, they were all rewarded with “a glimpse of who she used to be.”
“Trust the doctors, listen to your heart and your instincts. You can always go back if it doesn’t work, but you want to find your kid and get them awake as soon as possible.”
For more information about narcolepsy, view the NINDS Narcolepsy Fact Sheet and a summary blog from a roundtable meeting convened by SWHR to discuss the state of narcolepsy research and treatment. For additional narcolepsy resources, visit Wake Up Narcolepsy.
SWHR’s Narcolepsy Program is supported by an educational sponsorship from Avadel Pharmaceuticals. SWHR maintains editorial control and independence over educational content.