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Crisis Standard of Care: Management of Infantile Spasms during COVID‐19

As healthcare systems in the United States became overwhelmed during the COVID-19 pandemic, non-COVID patients lost access to traditional methods of non-emergency treatment.

Dr. Zachary Grinspan, MD

Dr. Zachary Grinspan, director of pediatric epilepsy and associate professor of population health sciences and pediatrics at Weill Cornell Medicine, and experts around the country realized that a lack of available hospital beds meant potential delays in treatment for children with epilepsy. They were particularly concerned about children with a disorder called Infantile Spasms, which occurs about as often as other well-known pediatric disorders like Cystic Fibrosis and Type 1 Diabetes. These children have brief seizures, called epileptic spasms, that occur in clusters throughout the day, as well as profoundly abnormal brainwave patterns on EEG. Outcomes for children with this disease are quite varied, but a missed diagnosis and lack of treatment can be devastating. The research team began developing recommendations for alternative solutions to manage the disorder.

A main worry surrounded the use of a medicine called adrenocorticotropic hormone (ACTH) to treat infantile spasms. Normally, ACTH treatment is started in the hospital, with nurses training parents on how to give their children the injection. That became an obstacle when families could no longer enter the hospital for non-urgent procedures and nurses could not travel to their homes. However, there is an alternative medication called prednisolone, a steroid medication with good evidence supporting its use for infantile spasms. Prednisolone has the added advantage that it can be picked up at most local pharmacies and given by mouth.

Dr. Grinspan and his network of national experts drafted an outline to combine well-established recommendations for management of the disease, as well as specific ways to give care during the pandemic. The expert group worked with both the Child Neurology Society and the Pediatric Epilepsy Research Consortium, of which Dr. Grinspan is chair of the steering committee. Dr. Grinspan notes Dr. Philip Pearl, director of epilepsy and clinical neurophysiology at Boston Children’s Hospital and president of the Child Neurology Society, helped jumpstart the original idea for this research. He also recognized Dr. John R. Mytinger, an attending child neurologist at Nationwide Children's Hospital in Columbus, Ohio, for putting together one of the earliest drafts of these recommendations. From there, Dr. Grinspan led the group to explain the rationale for each recommendation, which resulted in a manuscript with more than 70 references. 

Dr. Grinspan credits one of his closest collaborators, Dr. Renée Shellhaas, a clinical associate professor of pediatrics at University of Michigan and a trusted colleague, for recommending the phrase that summarized their work. “She texted me and said, ‘I just learned a new twerm: crisis standard of care.’ It crystalized what we were doing, because it allowed us to say, ‘Let’s deliver the highest quality of care possible when resources are limited’,” Dr. Grinspan explained.

Originally, a document laying out these recommendations was published on the Child Neurology Society website on April 6, 2020. The Journal of Child Neurology, which has a wide reach targeting child neurologists around the world, has published the manuscript. Annals of Neurology, a premier neurology academic journal, published a summary of the work in an editorial.

Now, Dr. Grinspan and this group of experts are waiting to see if their recommendations are followed around the country.

This has already begun as the American Epilepsy Society has adopted and disseminated guidance by Dr. Grinspan’s Weill Cornell Medicine pediatric epilepsy team and others around the nation. The complimentary consensus document provides decision considerations for prioritization of admission of pediatric patients.

Moving forward, Dr. Grinspan says these recommendations will be useful for quite some time. Immediately, they will guide clinicians for their patients who are unable to access hospitals during the pandemic, as well as those who are wary of returning to hospitals for treatment soon after the pandemic. But it doesn’t stop there. “Although we designed this for the COVID-19 pandemic, we recognize that this may be applicable in future national disasters.” 

Dr. Grinspan has been in awe of the collaboration he has witnessed while creating these recommendations. “The spirit of academic collaboration that has come out of the pandemic is really strong, inspiring, heartwarming, and a real testament to people’s interest in doing the right thing.”

Through it all, Dr. Grinspan continues to be proud to work for NewYork-Presbyterian/Weill Cornell Medical Center. “The clear dedication to health is very apparent and it comes from the very top,” Dr. Grinspan said. “The leadership at the highest level clearly spent every waking minute managing the transition of our healthcare system to adapt to the pandemic. I couldn’t be prouder to work here.”

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