A New Medication Has Given My Daughter Her Mornings Back

Recently, I wrote about our family’s periodic need to assess medication protocol. This helps us figure out what is and isn’t working. I am a caretaker of our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). It is important that I communicate with her to determine which medications or treatments may need adjustments. 

We don’t always see Grace struggling. We may not recognize when her meds wear off, or if she can’t easily get out of bed at night to go to the bathroom. Without her sharing this information with us, we would not know the whole picture. It is important that we maintain an open dialogue with her so that we can help her as needed. 

After Grace’s diagnosis, we were handed her medication and left to figure out a schedule on our own. The meds helped, but from about 8 p.m. until her first dose the next morning, she struggled pretty severely. She would wake up completely devoid of medication and struggle to speak, sit up, swallow, and even lift a water bottle to take her first dose of the day. 

Upon learning that some LEMS patients take an extended-release version of Mestinon (pyridostigmine) to cover the nighttime hours, I realized we needed to consider this option. 

At Grace’s last appointment with her neurologist, I asked for his advice about adding this medication. He had suggested it in the past but wanted to keep Grace on the lowest dose of medication possible. After telling him about Grace’s struggles in the morning, he thought it would be a good idea to add it and see if it helped. 

Grace started taking 180 mg of extended-release Mestinon before bed. Before this, her sleep cycle was very interrupted. She rarely slept through the night and often woke multiple times. On average, she would get five to six hours of sleep a night, which, for a teenager, is pretty low. 

The first night she took the extended-release pill, she slept for over nine hours, only waking up once. (We track her sleep on a health app.) Since then, she has consistently slept longer, and her sleep has been better quality. This is a huge win for her. 

Thanks to this medication, mornings have become so much easier for Grace as well. She no longer slurs her words and is beginning to get up on her own. She can carry on a conversation first thing in the morning and even lift a water bottle in order to take her morning medication. 

This has been a huge blessing in improving Grace’s quality of life and furthering her quest for independence. I am so glad that we have proactively looked for areas to improve upon, and I am grateful for the medication that has allowed us to accomplish that goal. 

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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.