Note from SADS Channel: we recently posed the question of ‘how does your family handle deciding if meds are ok to take?’ to several LQTS families. Their answers can be found here. This is Kat’s answer, which we thought needed to be its own post!
I remember experiencing relentless overwhelm at the news that my daughter had tested positive for LQTS. And, the more I learned about all the things I needed to do (or not do for that matter) there seemed to be a sense of overwhelm stacking up on me…sometimes more often then not. Like, seriously, how in the world was I going to be able to remember everything I needed to in order to protect her from everything?
The sense that I had to take so much into my own hands once I walked out of the cardiologist office was frightening. I had a lot of anxiety stemming from the fear that not doing what I needed to could potentially cost me my child’s life. It was almost immobilizing.
Technology and the world of apps on your phone makes looking up safe medications for your child with LQTS easier than you think. Every time something comes up- whether it’s treating a cold with OTC medication or getting a prescription medication- my phone becomes my best friend. And then, I become my family’s best advocate, by taking charge of making sure anything she needed was alright for her to take and would not put her into any danger zone. Over time, I became used to doing this. And now I can say I have a good recollection on what is on that list. If I am in doubt, I always ask the pharmacist. I have become so familiar with the CredibleMeds list that I become the one educating her regular physician on what is safe vs. what is not.
Part of being a parent of a child diagnosed with LQTS is learning to let go, having confidence in yourself, and just remembering it’s a lot of steps of just doing things differently!
My daughter has grown up around me being her best most confident advocate and she has followed my example in her own young adult life. She takes her LQTS seriously and exercises the same responsible measures for herself.