Grappling with summer school to catch up after NMOSD treatment
Despite occasional cognitive issues, my daughter's schoolwork continues
Summer for most teens is a time to relax, stay up and wake up late, enjoy time with friends, and be free from the demands and stress of high school. For my 15-year-old daughter, Bella, though, summer has been a time to catch up on schoolwork so she’ll pass ninth grade.
Bella was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) when she was 9 years old. As most of you readers know, NMOSD is a rare autoimmune disease that affects the central nervous system, particularly the optic nerve and spinal cord. In the years since Bella’s diagnosis, school has become quite a challenge for her because of the time she misses for treatments, doctor visits, illness, and fatigue.
Even though Bella hasn’t experienced a major NMOSD attack since she was diagnosed, she misses school at least one day a month to receive intravenous immunoglobulin therapy, which treats patients with antibody deficiencies. Bella also receives infusions of Rituxan (rituximab) once every five months. Checkups with Bella’s doctors come once every three months and last anywhere from two to four hours.
Because of the location of some of Bella’s brain lesions from her first and only NMOSD attack, she has trouble at times with cognition, processing, and memorizing information. While NMOSD’s main symptoms include issues with vision and muscle control, studies have shown that patients can also have cognitive impairments.
According to a 2016 review of studies, cognitive issues in NMOSD “may be due to depression, fatigue, and medication but may occasionally be due to primary involvement of the subcortical or cortical brain matter.” Research into NMOSD patients’ cognition is ongoing, and specific therapies haven’t been developed yet.
As a mom, seeing Bella struggle through school has been stressful and heartbreaking. Late nights of fun and freedom have turned into late nights of catching up on assignments and double-checking work, with frustration and even some tears from both of us. It’s important that Bella make progress in school so she can graduate high school on time, but her health and quality of life are the most important to all of us.
As Bella’s ninth grade year comes to an end, she continues to thrive, grow, and learn. The stress and sleepless nights don’t compare with the pride and happiness I feel because Bella is alive and well. She knows more about healthcare, illness, treatment, and advocacy than most people will learn in a lifetime. Her compassion, determination, strength, and positivity are an inspiration and motivation to not only me, but also to everyone she meets.
No matter the challenges life throws at us, I’ll always and forever be Bella’s No. 1 supporter, advocate, hype woman, and mom. At the end of this week, she and I are saying goodbye to her ninth grade year and hello to the 10th grade, where she’ll continue to grow and shine bright like a diamond.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).