Rodney A. Radtke, MD: Once a patient has been initiated on a medicine and you’ve titrated them, you’ve checked an initial level, and you’ve established that the dose is appropriate, the level is appropriate, now you’re going to go forward and follow them in terms of their management. One of the biggest concerns is consistent adherence or compliance with the medicine. It’s very hard to remember to take medicine every day, sometimes multiple times a day. And so this is a conversation I frequently have with patients in terms of, “What do you do to make sure you’re taking your medicine and how do you know you’ve taken it?” So I’m a big advocate for pillboxes in which you put out the week’s medicine, so if you get up on Tuesday morning and you look there and there’s Monday night’s medicine, you know you missed it, and then you can catch up and maybe avoid the breakthrough seizure the next day or the following day because of the medication mistake. In addition, it’s important to talk to your patient about what to do if they miss a dose and have a plan as to how they may or may not catch up. Some of our drugs you can double dose and do fine with, like levetiracetam. Other drugs, like lamotrigine, if you double dose that, you may have significant adverse effects in terms of CNS [central nervous system] toxicity.
One of the important things that happens in the clinic is when you’re getting a new patient who is transitioning from pediatric neurology to adult neurology, practitioners in pediatric neurology many times have a different focus and many times also have more support—in terms of social workers or nurses who are more nurturing and helpful, while the adult neurologist tends to be alone in the clinic without the supportive services as much. And so you need to be attentive to the new patient to make sure that they’re aware of community resources and other things that can help them re-equilibrate in the adult world. Particularly in the brain-injured or intellectually disabled population, you really need to work with them to gain access to community services and day programs, so they maintain their socialization and their quality of life.
At about the same time that patients are transitioning from pediatric neurologists to adult neurologists, the dynamic among caregivers, parents, and the children frequently changes, and there has to be a transition in terms of the independence of the patient and responsibility for taking medicine. And that can many times be a challenge, both in getting the parent to relax a little bit and get out of their kid’s face and in the child taking responsibility, being reliable, and consistently taking the medicine. I talked about using a pill box, and I talk about it with them because then it gives you the advantage of having the parent go behind them, check the pillbox, and make sure that the medicine has been taken. At the same time, they’re not in front of their child, questioning them, pushing them, and creating the antagonism that can go along with that relationship in trying to maintain adequate health care as that young adult or burgeoning young adult becomes more independent.
When patients are transitioning from the pediatric to the adult clinic, you need to make sure that the family members have avenues of communication. Well, with the electronic medical record now, they have better e-mail access. I’ve always used e-mail contact with the patients because I think it’s very important that they have the ability to communicate with their physician. It allows you to get back to them on your own time but in a timely fashion, possibly to keep them from going to the ER [emergency department] or addressing adverse effects rather than having ongoing issues. And as that child transitions into adulthood, you then also have to push the patient—that 18-year-old, 19-year-old—to communicate with their physician. They need to take responsibility for taking their medicine, and they need to take responsibility for communicating with their physician and other caregivers as to what’s transpiring so that we can troubleshoot and help out and try to maintain their seizure control and eliminate any setbacks in terms of adverse effects.