A reminder to stay vigilant while on immune suppression treatment
Rituxan helps my daughter, but it also exposes her to risks that worry me
She burned with fever the day we held her for the first time. Her little lungs struggled to breathe between coughing fits.
Our daughter Grace was just 13 months old when we traveled across the world to bring her home. When we got her to the hotel, we stripped her of the multiple layers of clothing she wore and found heat rash all over her body. We bathed and dressed her and listened to her labored breathing all night in that hotel room.
None of us slept that night.
I’d become a mother years before. I was familiar with the worry that comes with having a sick child, but none of my other children fought illness like Grace did. She had bronchitis often. Her colds lingered for weeks on end. Staph bacteria wreaked havoc on her 3-year-old body, leaving her hospitalized for seven days.
But gradually, as she grew older, she grew stronger. More time lapsed between illnesses, and we relaxed into the rhythm most families do when they have healthy children.
Grace was 14 when she started showing signs of what we now know as Lambert-eaton myasthenic syndrome (LEMS). The worry I felt deep in my soul when Grace was a baby returned with a vengeance at the onset of LEMS. I slept lighter, listening for her in the night. Every waking hour was filled with worry over all the ways LEMS was disrupting her health, her life.
Thankfully, we found a treatment plan that worked well for her. Her neurologist prescribed Mestinon (pyridostigmine) and amifampridine (first as Ruzurgi, then as Firdapse) as the first line of defense. She improved significantly. However, she was still severely hindered in her ability to walk and was tired all the time. We tried intravenous immunoglobulin (IVIG) treatment for almost two years, but she showed little improvement.
Finally, we decided to try Rituxan (rituximab), an immune suppression treatment. After her first infusion, she began to significantly improve. Her walking was stronger, she had more energy, she stopped gagging on her food and slurring her words. It was the biggest improvement we’d seen in her since she was diagnosed.
I exhaled in light of this improvement in Grace’s health. Rituxan gave me hope that Grace could achieve anything she set her mind to. Grace’s LEMS symptoms were finally manageable.
It’s been almost two years since Grace started on Rituxan. She continues to improve in strength and stamina. However, fear has a way of sneaking up on you.
Recently, I’ve been reminded of the risks that come with immune suppression. Of course, we understand Grace’s immune system is compromised and that her body will have a hard time fighting off illness or infection.
While we know that, I don’t think we allowed ourselves to dwell on it because the treatment was so necessary. Not until we hear of others on the same treatment plan struggling to get over illnesses do the risks start to sink in.
Those risks became real when Grace fought COVID-19 for a second time. She wasn’t able to clear the virus from her body without the help of monoclonal antibodies.
In such moments, the fear and doubt crowd out my peace. I ask the same questions again and again: Are the benefits worth the risk? Which treatment provides the best quality of life and function without compromising her long-term health? Are we making the right decisions for and with her?
I know we’re making decisions based on the best information available to us. Yet each decision is a calculated risk.
I’ve learned to work through the fear and use it as a catalyst to stay vigilant. We take precautions when Grace goes back into a school setting. I encourage her to wear a mask when needed. We limit her exposure to those who are sick.
When it comes to someone on immune suppression, there’s no such thing as being too careful.
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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