Educating my daughter on her care management as she enters adulthood
How a columnist is teaching her 18-year-old to manage her own healthcare
When our daughter was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, our world shifted overnight. Suddenly, every decision we made had to be filtered through Grace’s additional needs.
We moved to Jacksonville, Florida, to be closer to her neurologist. With her condition in mind, we picked out a one-story home, and I even set up my kitchen in a way that would make life easier for Grace.
So when Grace’s neurologist announced he was leaving the area, I momentarily felt like I was walking on shifting sand. This was a change I couldn’t control, but the fallout rested on my shoulders. I knew I’d need to maneuver the twists and turns of bureaucracy, including health insurance, referrals, approvals, and denials, in order to get Grace the care she desperately needed.
When the world of rare disease was thrust upon us, I never could’ve foreseen the tremendous amount of stress that comes with managing an illness like LEMS. Of course, we deal with physical symptoms, but we must also orchestrate the best care possible.
We continually ask for more physical therapy sessions. Many in the LEMS community have to petition for referrals to the best doctors. Some spend countless hours researching autoimmune diets and the effects of immunosuppressants and intravenous immunoglobulin therapy.
However hard, we stay the course and fight the good fight.
I happily shoulder all of these burdens for my daughter to improve her quality of life and physical health. However, now that Grace is 18, I know these burdens will soon become hers to carry, and we need to prepare her for that reality.
Bits of information at a time
Gradually, we’re giving Grace information that will help her understand how to manage her care, medications, and insurance. Little by little, I’m including her in the behind-the-scenes conversations that happen regarding her care.
Making decisions together
When Grace’s neurologist left the area, it gave us the opportunity to include Grace in the process of finding a new one. She saw the paperwork that went into getting the referral, appealing the original decision, and ultimately fighting for the best outcome.
I’m beginning to include Grace in the communication aspect of her care management. Recently, Grace’s physical therapy facility told her about a billing discrepancy while she was checking in. Instead of me rushing in to fix it, I explained the discrepancy to Grace and had her discuss it with the receptionist at her next visit.
Grace began managing her medications early in her LEMS journey. From the beginning, she has sorted them out for the day and been responsible for taking them with her when she leaves the house.
More recently, I’ve educated her on how we go about refilling her prescriptions, which pharmacy we use for each medication, and how to contact the specialty pharmacy.
Keeping our ultimate goal in mind
Since we know stress can trigger a flare in Grace’s LEMS symptoms, it’s my goal to walk her through medical challenges while she’s still under our care. I do this so that when she has to face these challenges independently, she will feel equipped to handle them with ease.
Note: Lambert-Eaton 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 provider 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 Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.