Losing our neurologist leaves me anxious about switching doctors

A columnist's daughter must say goodbye to her beloved pediatric neurologist

Lori Dunham avatar

by Lori Dunham |

Share this article:

Share article via email
banner image for the column

This week marks a new chapter in our daughter Grace’s rare disease journey. A few months ago, her pediatric neuromuscular neurologist announced that he was leaving his practice, and we had our final appointment with him last week.

When Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, we were stationed in Panama City Beach, Florida, for my husband’s career with the U.S. Navy. The closest pediatric neuromuscular neurologist was five hours away in Jacksonville. We made the drive across the state often in the months leading up to her diagnosis.

Once Grace was officially diagnosed, the Navy was obligated to move us within two hours of Grace’s doctor per its Exceptional Family Member Program. We now reside permanently in the Jacksonville area.

Over the years, we developed a deep attachment to Grace’s pediatric neurologist. Grace was the first LEMS patient he’d ever treated, so he took a special interest in her case and always gave us his undivided attention. He not only provided his expert medical advice, but he also shared nuggets of wisdom regarding all aspects of life. He genuinely seemed to care for her.

He and I also developed a close relationship, often sharing updates, news, and legal decisions about medications.

We were sad when he broke the news to us at Grace’s appointment in November that he’d be taking a position in another city. After almost four years, he’ll no longer be a part of her medical team.

Recommended Reading
banner image for the column

Coping With Surprises in Life With a Rare Disease

The challenge of switching doctors

I don’t like change, so his departure fills me with great anxiety. It also leaves me asking a lot of questions.

Who will be Grace’s new neurologist? How will she manage not having a neurologist for a while as we wait for an appointment with a new doctor? How many prescription refills could our current neurologist prescribe to hold her over?

To complicate matters further, Grace’s 18th birthday is quickly approaching.

Will she need to be referred to an adult neuromuscular neurologist, or will the pediatric team continue to see her? Will our insurance approve the doctor’s referral? 

Our final appointment with the neurologist last week was bittersweet. I was grateful it gave us an opportunity to express how much he’s meant to us. He has taken pride in seeing Grace’s progress, knowing he had a hand in how well she’s currently doing.

However, it was difficult to let go. I realized he was a security blanket for me. I always knew I could email him and he would respond immediately. If we had trouble gaining access to a much-needed prescription, he was always available to help.

I feel like I’m floundering in the deep end of a pool without a life vest. I know I just need to take one step at a time as we look for a new neurologist. First, we need to wait until Grace turns 18 in a few short weeks. Then, we need to see her primary care doctor for a referral to the Mayo Clinic here in Jacksonville.

A team of doctors there helped Grace’s neurologist diagnose her, and he assures me they’re ready to take her on as a patient as soon as she turns 18. This requires me to be patient and trust the system to work as it should.

In the meantime, we continue to work toward healing for Grace. We’re hopeful about her new neurologist, whoever it may be.

How have you maneuvered the transition between doctors? Please share in the comments below.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.


Leave a comment

Fill in the required fields to post. Your email address will not be published.