When Bella had her first seizures, I was entirely unexperienced with daily medications. I had been on antibiotics, and all of my kids had been on antibiotics from time to time. Those five or ten days of taking medicine were such a struggle to keep up with.
When I was given discharge instructions from one of the nurses, I clearly remember the shock I felt when she explained to me that Bella would need to take her dose of phenobarb and her dose of Dilantin two times a day, every day. The doses were to be administered every 12 hours; every single day.
I had such a difficult time wrapping my head around this. I asked her, “for how long?” I could not grasp the concept that I would not get a break from this. That I needed to crush the pills, and to mix them with applesauce, and force them into the mouth of my 9 month baby girl every single 12 hours was just so much for me to accept.
My eyes were wide with worry. I just kept looking at the nurse questionably. She finally said, “Choose one time a day. Here, in the hospital, we give meds at 9am and 9pm. Maybe 8am and 8pm will work better for you at home. But you need to just choose one time of day, because that time will happen twice.”
It seems so very simple to me now, but after seeing my baby have so many seizures, and after seeing my baby go through a horde of tests from MRIs to a mound of bloodwork to spinal taps, this simple concept of remembering to give her medicines twice daily was too much to fathom.
These days the medicine every morning and every night is like clockwork – sort of. From time to time, we get busy, and she runs late. Technology has a number of tricks to help a person out. We can set alarms on our smartphones; there are apps to help you out. For anyone that takes medicine on a regular basis, it’s important to not stress about it, and to be somewhat flexible with yourself.
One more struggle we have had, especially this past year, is keeping up with the changes. Bella currently takes four medications, but doses have changed a number of times. The type of medicine has changed on two of her meds as we switched them to an extended relief form.
How do we keep up with it? I am the one who fills her pillbox all the time. But I want my family to know what she takes, especially if the current prescription labels are incorrect. Recently, I have begun taking pictures of her pills, and sending them via text message to her dad, and to all of her sisters. In the past, I typed up a daily med schedule, and included photos of the exact pills (downloaded from google). This year held too many changes, and I found it difficult to keep up with. Smartphones and technology can be such useful tools. I am glad to have them today, and sometimes wish they had been around 20 years ago!
The struggle of taking and administering daily medications can be daunting. Being organized, filling a pillbox, setting alarms, or marking it on your calendar make remembering to take them much easier. It is an effort by the entire household. Working together to devise a plan that everyone can follow will make the struggle more manageable.
*Always discuss any medication concerns with your doctor. Don’t make any changes without the doctor’s consent.