Switching doctors brings unexpected challenges for my daughter

Reading is one of my favorite pastimes. Some of my earliest memories are sneaking away to the bedroom I shared with my sister and opening a new book. This love of reading has followed me into adulthood, and I’ve endeavored to pass it on to my children.

One of my favorite series to read as a child was “Choose Your Own Adventure.” These books would offer you a choice at the end of each chapter, prompting you to flip to a particular page, depending on how you wanted the story to continue.

It was so fun to have a say in the story’s outcome.

These days, I feel like I’m in my very own “Choose Your Own Adventure” story. Each decision regarding my daughter Grace’s health and future weighs heavily on me. I know each choice will have a domino effect on other areas of her life.

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March 13, 2023 Columns by Lori Dunham

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Navigating changes in Grace’s care

Almost four years after Grace’s Lambert-Eaton myasthenic syndrome (LEMS) diagnosis, we’re finally seeing her strength rally and abilities return. She’s stronger and not as tired as she used to be. Grace is no longer gagging on her food or slurring her words. She’s even been able to reduce one of her medications by 10 mg.

But now, her pediatric neuromuscular neurologist has left the area, and we’re scrambling to keep her care consistent while we wait on referrals and appointments.

We were told by three separate doctors to get Grace into the local Mayo Clinic. We requested the referral, which our insurance promptly denied. We appealed the decision based on the limited availability of other local doctors who are knowledgeable about LEMS, and we were granted approval.

Then came the waiting. We were told we’d sit on the Mayo waitlist for three months, at which time Grace would be removed from the list and the process would have to start over.

Thankfully, a few weeks before the three-month deadline, we were offered an appointment. We’re relieved to know Grace will soon be under the care of a new neurologist. However, I’m beginning to realize the decision to move her to Mayo affects more than the name of her neurologist.

First, he wants to run an updated electromyography test, which Grace is not looking forward to. She had three of those tests done during the diagnostic process, and each one was more painful than the last.

Second, Grace’s rheumatologist informed us that Grace may have to switch from her care to a rheumatologist at Mayo. She believes the new doctor will want all of Grace’s procedures, including her Rituxan (rituximab) infusions, to be done at Mayo.

Finally, I’m anxious to see if the new neurologist wants to change anything in Grace’s care plan. She’s doing so well that I’d hate to change things up.

I’m trying to keep an open mind as we prepare for her appointment. We’re grateful to have a new neurologist and want to keep her moving toward increased health and strength.

The outcome of Grace’s story will be a good one. We continue to help her navigate every decision and give her a voice in all the changes happening.

Change isn’t bad, just different. We need to adjust to our new normal as we establish new relationships. In the meantime, we continue to look forward to new and improved treatment options for everyone living with LEMS.

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 myasthenic syndrome.