Why We’re Not Following Through on a Doctor’s Suggestion

Lori Dunham avatar

by Lori Dunham |

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I never thought much about the rhythm of our days until our daughter Grace, now 17, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14.

Time seemed to crawl when my children were toddlers. My husband was often deployed with the U.S. Navy, leaving me to fend for myself with the children. We always found a rhythm while he was gone that made the weeks bearable: Monday was soccer, Tuesday was the kids’ day out, Wednesday was dinner at church and the kids’ midweek activities, and so on.

As our children became teenagers and flew farther and farther from the safety of our home, time passed all too quickly. Our rhythms were different from the toddler years, but our days still had a comfortable cadence.

When a LEMS diagnosis interrupted Grace’s teen years, our rhythms quickly changed once again. We were no longer setting our clocks to the school calendar, but to the daily rhythm of medication schedules, monthly IVIG treatments, and biannual Rituxan (rituximab) infusions.

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These routines bring Grace much comfort and ease. She watches the clock and knows when her body needs more medication. She is cognizant of when her medication is about to run out and gets antsy if the refill arrives late.

So when, at her last appointment, her doctor suggested she cut back on her medication, Grace panicked. This is not the first time he has suggested this. Whenever Grace makes significant progress in her abilities, her doctor brings up the possibility of cutting back on the amount of Firdapse (amifampridine) or Mestinon (pyridostigmine) she takes in a day.

While I appreciate his desire for her to take the least amount of medication possible, I also know Grace is making progress because of her current LEMS treatment plan.

As is common for many patients, Grace feels when her medicine kicks in and when it wears off. She needs a dose of Firdapse and Mestinon to get out of bed each morning. On busier days, she often takes extra medication for a boost of energy and stamina.

As the doctor conveyed the possibility of cutting back on medication, I could see Grace glancing at me and panicking. Had we not been wearing masks, I could’ve calmed her with a facial expression that said, “Don’t worry. I won’t take away your medication.” But masks prevent these silent signals, and so I watched her squirm as he pitched his idea.

Although Grace’s doctor has been nothing but caring and compassionate toward her, he’s never treated another LEMS patient. Grace’s health is somewhat of a puzzle that he tries to piece together. He wants to see what works and what doesn’t, what dosage of medication can sustain her, and which treatments work best. This involves much trial and error. However, the problem is that Grace can’t afford to decline in her abilities and stamina.

So this rule-following mother put her arm around her daughter as they walked out and spoke words she never thought she would: “We aren’t going to do what the doctor suggested.”

We aren’t willing to allow Grace’s health to deteriorate just when she’s found a treatment plan that works for her. If she gauges how she feels and thinks she can skip a Mestinon dose midday, I’m all for it. I would love for her to take less medication — just not at the expense of her mobility.

Has a doctor suggested you wean off a medication that’s helping you? Please share your experiences 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.

Comments

Jessica avatar

Jessica

I have LEMS and if you are being treated by a doctor who has little or no experience with this illness, the difficulty of treatment is amplified. I invite you to reach out to me via email and I will share my experiences with you.

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Sue Davenport avatar

Sue Davenport

I have been very sick for about 18months and just 2 days ago I was given the answer. I had figured it out myself. On Rare Disease day I read about LEMS,was tested and was told " I have it!" My Drs.were not happy I discovered the answer!
I am in "Limbo" What do I do now?

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