• Before transitioning from pediatric to adult care for spinal muscular atrophy (SMA), it’s important to learn all you can about what goes into your treatment regimen and care plan.
• Asking questions, taking notes, and bringing a trusted friend or family member with you to doctor’s appointments can help you gain the knowledge you need.
• You can interview specialists in adult care to find a good fit, knowing you can stay with your pediatric neurologist if that works best for you.

Teens and young adults with spinal muscular atrophy may think about transitioning their care from their pediatric specialist to a specialist in adult neuromuscular disorders. It can be daunting to take on more responsibility for one’s treatment, especially when it involves switching to a new neurologist.

With the availability of two medications — Spinraza (nusinersen) and Evrysdi (risdiplam) — approved to treat SMA in older children and adults, outcomes are expected to improve for many with SMA. Better outcomes may mean more young adults with SMA will want to ask for a referral to a neurologist who specializes in adult care.

As Dr. Jonathan Strober, a specialist in childhood disorders of the nerves and muscles, put it, “Now that people are going to do better with SMA, maybe they don’t need to stay in the pediatric world as long as they have in the past.”

Dr. Strober is the director of the Neuromuscular Clinic at UCSF Benioff Children’s Hospitals. He spoke with mySMAteam about good practices to keep in mind as people with SMA approach the transition from a pediatric specialist to a specialist in adult neuromuscular disorders. Below are his recommendations.

Be Prepared

“As questions and thoughts occur to you, write them down so you can come in with a list,” Dr. Stober advised. “You’ll forget some things that you wanted to ask when you come in. It’s very important to be prepared.”

Ask Questions

“Ask lots of questions of your current pediatric specialist and get to know your care,” Dr. Strober said. “Information is power, knowledge is power. So knowing all of the ins and outs of your SMA care is extremely important when you’re considering transitioning to another specialist.”

Stay Organized

Dr. Strober advised finding ways to keep your health care information organized. “As you take more responsibility for your own care, write things down,” he said. “Keep a book, or dictate it all on a phone or a tablet. In whatever way works best for you, keep a log of everything care-related.”

Take Someone You Trust

“If you can, bring somebody with you to medical appointments,” Dr. Strober said. “It’s hard if you’re alone, because then you don’t have anyone to bounce things off of. They can ask questions that you forgot.”

Find a Good Fit

As Dr. Strober explained, “There’s nothing wrong with interviewing a specialist in adult care. Make an appointment, meet them, see if it’s a good fit.”

If You Need To, Stay With Your Pediatric Specialist

“Your pediatrician has been treating your condition all your life,” Dr. Strober said. “We’re not pushing you out the door. That’s what I tell my patients who are a little more fragile, whose care is a little more nuanced. If you can’t find a specialist in the adult world, if it’s not a good fit, you can come back to your pediatric specialist because you know they’ll keep treating you.”

For a discussion of the potential challenges and benefits of transitioning from pediatric care, read the companion article to this piece, Considering the Transition to Adult Care for SMA: A Q&A With Dr. Strober.