Evaluating the risks and rewards of our daughter taking prednisone

Our family had to balance the choices when considering medical consequences

Lori Dunham avatar

by Lori Dunham |

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From the time I was a little girl, I’ve always loved gymnastics.

I grew up in the 1980s, when gymnast Mary Lou Retton was taking the world, or at least the United States, by storm. She won a gold, two silver, and two bronze medals at the 1984 Summer Olympics in Los Angeles. Watching her perform inspired me to take gymnastics. I had the physical build for it, and I loved the idea of flying gracefully through the air on the uneven bars. Gradually, I learned the parallel bars, floor exercises, the pommel horse, and the balance beam.

The balance beam came hardest to me. Each week, I’d spend significant amounts of time learning to balance. I eventually learned to do cartwheels and flips while sticking the landing on the beam. But more often than not, my doubts and fears took over even before I got on it, setting me up for failure.

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Walking through the day-to day life of raising a child with Lambert-Eaton myasthenic syndrome (LEMS) often feels as if I’m back on the balance beam. I’m desperately trying to stay balanced and upright.

Some days I carry the weight of the decisions our family faces better than others. When my husband and I consider whether our daughter, Grace, should try a new medication or other treatment, I weigh its long-term risks and benefits. How will it affect her health down the road?

The prednisone question

We made one such decision early in Grace’s LEMS journey, when she’d just been diagnosed at age 14. Her neurologist wanted to start her on prednisone. I didn’t know much about it at the time, but the doctor was pretty thorough in his explanation. He believed the benefits outweighed the risks, at least for a short period of time. He peppered us with warnings, but ultimately encouraged us to start her on the drug.

Grace began taking it at a low dose. Immediately, we noticed her strength increase. Her walking became stronger, and her fatigue improved. However, one of the dreaded side effects of prednisone is weight gain, with what people call “moon face.”

Grace had lost more than 15 pounds when she first developed LEMS symptoms, and she weighed barely 60 pounds when she was finally diagnosed. Given that, I wasn’t too worried about her gaining weight; in fact, I welcomed it. She did begin to develop a round face, which bothered her, after a few months on prednisone. Still, it helped her regain the weight she’d lost, and that was a very good thing.

I was more concerned with her bones since prednisone is known to cause them to thin as part of osteoporosis. Since Grace was so young, I didn’t want to deplete or damage her bones permanently. Her doctor started her on calcium and vitamin D supplements to go with the prednisone, hoping to counter the negative effects of her bones.

Ultimately, Grace spent only a few months on prednisone. Her doctor gave her just enough time to build up her stamina and regain some strength before tapering her off.

Living with LEMS presents caregivers and patients with many treatment choices. I’m thankful we have these decisions to make since so many rare diseases don’t have treatments available.

I’m learning to fight the fear that creeps in as we make decisions to sustain and improve Grace’s health. We balance the pros and cons, the risks and rewards, and move forward confident that we’re making the best decisions, given the information we have. That’s the most we can do!

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.


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