Treating Our Daughter’s COVID-19 With Sotrovimab

Lori Dunham avatar

by Lori Dunham |

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Given the most recent COVID-19 surge, it seems that many people are resigned to getting sick with the new coronavirus variant, omicron. I pushed hard against this idea because our daughter Grace, 16, has the autoimmune disease Lambert-Eaton myasthenic syndrome. Although many have described omicron as just a bad cold, we couldn’t be certain that would be the case if Grace got sick.

Unfortunately, omicron did make its way into our home. After more than two years of evading it, COVID-19 managed to breach our defenses. Grace initially tested negative several times but exhibited symptoms of a mild cough and a sore throat.

The rest of the family cycled through mild symptoms, tested positive, and healed within seven days. Although Grace’s symptoms are mild, she can’t seem to clear the illness from her body, which leaves her lethargic and weak.

On about the fifth day of having symptoms, Grace finally tested positive. After she did, her rheumatologist said she would move to the top of the list to receive the monoclonal antibody sotrovimab.

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Sotrovimab is an investigational medicine used to treat mild to moderate symptoms of COVID-19 in adults and children who are at a high risk of progressing to severe COVID-19. Its use was approved with an Emergency Use Authorization by the U.S. Food and Drug Administration.

Because Grace has an autoimmune disease and receives the immune suppression therapy Rituxan (rituximab), we knew she was at risk for life-threatening symptoms from COVID-19.

Today, I took her for a sotrovimab infusion. We couldn’t go to our children’s hospital, where they usually pamper us with snacks and warm blankets. Instead, we had to go to an infusion center at a trauma hospital, which was a much more sterile environment. While we missed the friendliness and ambience of the children’s hospital, we were grateful the antibodies were available to Grace no matter the environment.

The infusion was much like her monthly intravenous immunoglobulin treatments. The nurse was skilled at running Grace’s IV. With the exception of an hour-long wait for the medicine to arrive, the infusion took only 30 minutes, followed by an hour-long observation period.

The nurse said that most people who’ve had the infusion at their clinic reported a significant response within two days of receiving the infusion. I’m hopeful this treatment will give Grace the boost she needs to kick the virus.

Sometimes it seems like when we finally get Grace to a good place physically, she takes two steps backward. If things go well, this will only be a temporary setback, and once she clears the virus from her body, she’ll regain all of the strength she’s worked so hard to attain.


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.

Comments

Richard Poulin avatar

Richard Poulin

Thank you for sharing your story and I am hoping to read next week about her recovery. I can completely relate to being in and out of the hospitals. It's a Catch-22 when the nurses begin to know your name. Our daughter also suffers from a rare disease and she is at risk for lung infection normally. It was interesting to read about monoclonal antibodies as a treatment. Hang in there and you are always moving forward.

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Lori Dunham avatar

Lori Dunham

Hi Richard. Thank you so much for your kind words. Grace is doing much better since receiving the monoclonal antibodies. It took about a week for her to completely get over all of her symptoms but the sotrovimab definitely helped her! I'm so grateful for the treatments available. I hope your daughter is doing well.

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stephanie avatar

stephanie

How is Grace now post-treatment? I am getting the treatment today since I also have an autoimmune condition. Super nervous since not a lot of people have received it!

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Lori Dunham avatar

Lori Dunham

Hi Stephanie. Grace did really well with the antibodies. It took about two days to start seeing improvements in her cough and weakness. After a week, she was back to her pre-covid self. Are you receiving the sotrovimab infusion? How did you do with it?

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