The challenges of maintaining a healthy weight with LEMS
The symptoms of LEMS can make eating and swallowing difficult
All of my babies have been little since birth. My two biological children weighed 6 pounds or less when they were born. Even our daughter Grace, who was adopted at 13 months old, was a tiny little thing when she came home to us.
Except for Grace, food just didn’t seem important to my other children. I used to joke that they ate simply to survive, not to enjoy it. My husband and I just couldn’t relate!
Grace was the exception when it came to food. She had a bigger-than-average appetite. She enjoyed food and loved to try new things. Nevertheless, she was still on the small side.
Grace was 14 when she got sick with Lambert-Eaton myasthenic syndrome (LEMS). At the time, she weighed 84 pounds. Over the next nine months, as we waited for a diagnosis, her weight dropped to a scary 71 pounds. The combination of muscle atrophy and difficulty swallowing her food made it nearly impossible for her to keep weight on.
When she was diagnosed with LEMS, we considered putting her on the autoimmune protocol (AIP) diet, which aims to reduce inflammation and other symptoms by eliminating foods for a period of time and then gradually reintroducing them to monitor how the body responds. I read up on the AIP diet, as we wanted to do everything we could to fight this disease and prevent Grace from acquiring other conditions. But until she gained her weight back, we knew we couldn’t limit her diet so severely.
Initially, Grace’s neurologist prescribed her prednisone, which we hoped would help her gain some weight. It did, but not enough.
Gradually, her body responded to medication and other treatments. Thankfully, after about four months of intravenous immunoglobulin replacement therapy, she stopped gagging on her food. Next, she was finally able to eat a healthy portion of food without struggling to swallow. Her love of food eventually returned.
After starting Rituxan (rituximab) infusions, her energy increased each month. Over time, she was increasingly able to walk farther distances for longer periods of time. Her appetite continued to grow, and her body regulated itself to a healthy weight.
Today, Grace’s weight is within the normal range for her height and age. She no longer looks sickly and can eat anything without the fear of gagging. It took time and patience, but she’s finally back to a healthy weight.
Have you struggled to keep weight on or off with LEMS? Please share 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 myasthenic syndrome.
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Comments
Georgia
Hello Lori,
First of all Im glad your daughter is doing better. I hope that every day is even better than before.
I recently got diagnosed with LEMS and I lost 20 pounds in a month, I was throwing up whatever I ate. Thankfully now I have found my appetite and I am slowly gaining weight. I have been in medication for the last two months and I haven't seen any difference, except eating and I also don't have difficulty to breathe. But I can not walk normal, not even stand straight. In a few days I am getting my first infusion of rituximab but I am a little concerned about if there's are any side effects.
Lori Dunham
Hi Georgia. I am sorry to hear of your trouble with LEMS. My daughter also does rituximab infusions and that was by far the best treatment for Grace. It took some time but she built her strength back up so that she walks further and better than she has since diagnosis. She has not had any adverse side affects from the rituximab. I hope your body responds well to the rituximab infusions!!!