Transitioning from Pediatric to Adult Neurologist
Transitions are always difficult, but can also be rewarding when done with preparation and awareness of the important issues. It can be particularly difficult to leave the neurologist who may have been the one who diagnosed you with epilepsy and guided you through difficult times.
There are several issues that will arise as you transition toward adulthood.
- Independence and personal responsibility. Most likely, there has always been someone there to make sure your prescriptions were filled, and even to remind you to take your medications. At some point this will be your responsibility, and maintaining control of your seizures will depend only on your actions. The most common cause of breakthrough seizures in patients who were previously well-controlled is a forgotten dose of medicine. When you meet with an adult neurologist, compliance should be one of the major topics of discussion. Some important questions are: When do you take your medicines, do you have a reminder system, and could you benefit from extended release formulations to simplify your schedule?
- When asked about how epilepsy impacts their lives, the most important issue that arises among adult patients is that of driving. Driving rules vary by state, but achieving and maintaining control of your seizures is critical for your ability to drive, which in turn determines whether you can commute to school, job, or just to go out with your friends. Hopefully, your seizures are controlled to the point where you are able to drive, but if not, your adult neurologist will be working with you to get them under control. They should discuss these issues with you, so that you can understand the risks and set realistic goals.
- As a child, your parent(s) took you to the doctor, and it probably seemed that the appointment was with your parent(s) and the doctor more then with you. This situation will change, because you must see the neurologist as YOUR doctor, and you must develop a relationship of trust with your physician. In order for your neurologist to take good care of you, you must tell them anything and everything that may affect your condition: whether you are taking the medicine correctly, whether you are getting good sleep, drinking alcohol, etc. Some important things that you need to say or questions that you would like to ask, you may not want your parents to hear. Ultimately you must be the one who comes to the appointment and speaks to the doctor, alone.
Here are two pieces of advice for a successful transition:
- The “handoff” – ask your neurologist if they know an adult neurologist who might be a good fit for you. Doctors have different personalities and styles. Your pediatric neurologist knows you and may have someone in mind. Request that they send your records ahead of your visit, or give you a copy of your records.
- Meet the doctor with your parents, but remember that you must work toward the goal of coming to appointments alone. This can be accomplished by having the parents sit in at the early part of the appointment, give their part of the history and ask their questions, and then ask them to return to the waiting room for the second part of the visit between you and the doctor. Eventually they will not come in at all, and your neurologist will help decide when that time is appropriate.
Dr. Mathews is a neurologist in Silver Spring, Maryland where he owns a practice specializing in the diagnosis and treatment of epilepsy. In addition, he is the Medical Director of the Epilepsy Monitoring Unit at Holy Cross Hospital in Silver Spring. Dr. Mathews holds a Bachelor of Science degree in Biology from Georgetown University in Washington, D.C. He earned his medical degree and Ph.D. from Washington University School of Medicine in St. Louis, Missouri. He completed his residency in Neurology and Fellowship in Clinical Neurophysiology and Epilepsy from Johns Hopkins Hospital in Baltimore.