Many neurologic diseases, such as epilepsy, spinal muscular atrophy, muscular dystrophy, or Down syndrome, begin in childhood when patients are seen by pediatric neurologists. What happens when these patients age into adulthood? Do they stay with their pediatric specialist or switch to a neurologist who treats adults or both children and adults?
The accepted wisdom is to transition to doctors who treat adults, says Bruce H. Cohen, MD, FAAN, professor of pediatrics at Northeast Ohio Medical University and director of the NeuroDevelopmental Science Center at Children's Hospital Medical Center in Akron.
Patients approaching adulthood may feel uncomfortable in an office geared toward children, says Ann Henderson Tilton, MD, FAAN, chief of the section of childhood neurology at the Louisiana State Health Sciences Center in New Orleans. There are other practical reasons, says Seth M. Keller, MD, a neurologist in Lumberton, NJ, who is also the co-chair of the American Academy of Developmental Medicine and Dentistry's national task group on intellectual disabilities and dementia practices. “Adult metabolism is different from that of children, and doctors for adult patients will know better how to treat them, and, if needed, to adjust medication doses.” For women of reproductive age, a doctor who treats adults may be better equipped to discuss conception and pregnancy. Likewise other adult medical problems such as hypertension are best handled by doctors who treat adults.
To ease the transition, consider these eight questions.
1. WHEN SHOULD WE START THE SEARCH? Parents and patients should start discussing the transition with their doctors no later than the patient's 13th birthday per the Child Neurology Foundation's 2016 consensus statement, and complete the transfer between ages 18 and 21, says Dr. Cohen. Starting the conversation early can help make the transition less abrupt, says Dr. Tilton.
2. HOW SHOULD WE TALK ABOUT IT? Parents and patients should share their feelings about the transition with the patients' doctor, says Dr. Tilton. “It's an emotional time for us as well,” she says. “We've seen this person grow up. It's a relationship that has been going on for a while.”
3. HOW DO WE FIND THE RIGHT DOCTOR IF OUR ADULT CHILD HAS A COGNITIVE DISABILITY? Ask for suggestions from a doctor who knows your adult child well, advises Dr. Tilton. Share with your doctor the characteristics that are important to you in a new neurologist such as an easy manner or willingness to discuss concerns by phone or email. Then follow up with the names to see if the doctors are seeing new patients and take your insurance. You can also reach out to a support group.
4. WHAT OTHER FACTORS SHOULD WE LOOK FOR IN A NEW NEUROLOGIST? Make sure the neurologist is familiar with your adult child's condition and interested in staying updated on new treatments and studies. Find out how many patients with similar conditions the doctor has treated.
5. HOW SHOULD WE PREPARE FOR THE FIRST VISIT? Ask the current doctor if he or she can email or call the new doctor to talk about the patient's diagnosis, prognosis, and treatment. Also, make sure all records have been transferred. Remember to share any personal notes about your child's history.
6. WHAT ELSE SHOULD WE ASK OUR CHILD'S PEDIATRIC NEUROLOGIST? “Ask if you can check in with him or her for the first few months as you get used to the new doctor,” says Dr. Keller. It may help make you feel more comfortable about the transition.
7. WHAT ARE IMPORTANT QUESTIONS TO ASK DURING THE FIRST VISIT? Ask about how to schedule appointments, refill drugs, and reach a doctor in an emergency. “Be sure to ask what changes to expect in terms of treatment, if any, such as new drugs or new dosing,” says Dr. Keller, who also recommends noting how the doctor interacts with your adult child. “A new doctor may be a fine clinician but not have experience dealing with someone who has an intellectual disability, for example,” says Dr. Keller. “Rather than assume the relationship won't work, make some suggestions to the new doctor during the appointment, such as facing the patient, speaking more slowly, and writing down some key instructions.”
8. WHAT ARE COMMON DIFFERENCES BETWEEN A PEDIATRIC NEUROLOGIST AND ONE WHO TREATS ADULTS ONLY? Pediatric neurologists typically treat not only neurologic conditions, but also cognitive issues such as ADHD and autism. If the adult neurologist does not treat behavioral problems, then transitioning may also require seeing an adult psychiatrist for medication and guidance. Ask about that when you inquire about switching or when you first meet the new neurologist, says Dr. Keller.
RESOURCES TO HELP PARENTS AND PATIENTS PREPARE
For more information about transitions of care, watch a new video from the Child Neurology Foundation at http://bit.ly/CNF-Video-Transitions. Or visit Jason's Connection at http://jasonsconnection.org. This online resource for people with disabilities was developed by Jason Harris, who is on the autism spectrum. The site has recommendations for doctors experienced in treating patients with disabilities. The staff at Jason's Connection can also help you search.