How We Decided to Change Our Daughter’s Medication Schedules

It seems that Lambert-Eaton myasthenic syndrome (LEMS) likes to keep us guessing. Two years after our daughter Grace’s diagnosis, we are still learning how the disease affects her. 

On many days, we feel that Grace has settled into a manageable routine. We see improvement in her walking, balance, and core strength. She has more energy and doesn’t complain of being tired all day. We are encouraged and filled with hope. 

Then, we’ll roll into the next week expecting her to continue on this path of strength and energy, but it doesn’t happen. She’ll wake up feeling weak and struggle to eat without gagging on her breakfast. She’ll battle intestinal issues due to some of her medications, and have interrupted sleep throughout the night.

Discouragement settles heavy over the household as we realize we need to make some changes. 

Grace is a creature of habit. She likes routine and follows the rules. If the doctor told her to stand on her head for an hour a day, she would do it. In many ways, this is a great quality. But it also hinders her ability to adjust to her body’s needs. 

When Grace was diagnosed, she was prescribed Mestinon (pyridostigmine) and Ruzurgi (amifampridine), the latter of which recently had been approved by U.S. Food and Drug Administration for children with LEMS. But we weren’t given instructions about how to space the medications throughout the day.

Grace took 60 mg of Mestinon and 20 mg of Ruzurgi three times a day, the daily limit for both. 

For the past two years, Grace has taken the first dose of each medication as soon as she wakes up. She is unable to get out of bed before taking Ruzurgi, so she takes it while still lying in bed. 

Ruzurgi works well with Mestinon, so I assumed they needed to be taken together. I didn’t realize that taking Mestinon on an empty stomach can cause intestinal issues. 

As Grace’s school schedule changed, we needed to adjust the timing of her medications to keep her active longer. Taking her last doses of the day at 5 p.m. was entirely too early, but Grace didn’t want to take less medication more often. She was tied to her routine, so I did everything I could to help her break the habit. 

After much coercing, I encouraged her to make a few changes. The following schedule has made a huge difference. It not only eliminated the intestinal issues she was having, but also increased her energy throughout the day.

• Grace now takes 20 mg of Ruzurgi while still in bed in the morning.
• She eats breakfast, then takes her first dose of Mestinon.
• She takes her remaining Mestinon doses after each meal.
• Instead of taking 20 mg of Ruzurgi at lunch, she takes 10 mg at lunch and 10 mg in the mid-afternoon. 
• She takes 10 mg of Ruzurgi at dinner.
• She takes 10 mg of Ruzurgi around 8 p.m. to get her through until bedtime. 

We have learned that it is important to figure out what works best for Grace’s body depending on the circumstances. Not all days look the same. Flexibility is key as we search for the sweet spot that provides her optimal benefit from her meds throughout the day. 

Our goal in all of this was to teach Grace how to advocate for herself. If something isn’t working, we want her to talk to her doctor. If she is running out of meds too early in the evening, we want her to shift the schedule if possible. I will not always be able to manage her medications for her, so it is important we teach Grace how to do this for herself. 

Making these changes has improved Grace’s quality of life tremendously. Of course, we never want to make changes without talking to our doctor first. However, Grace’s willingness to try something different has definitely paid off. 

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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.