Mind & Body

Edward walks again!

The amazing progress of Edward Corrigan in his recovery from PANS

Photo by Jennifer Toone Corrigan

Edward Corrigan, 5, walking on his patio, playing with bubbles.

By Richard Asinof
Posted 4/14/14
Edward Corrigan’s recovery from PANS – still an ongoing process – is a testament to his parents’ efforts to pursue a course of treatment, depending on support from an online network of fellow PANS parents and friends. It helps to redefine what a community is in the digital world we live in.
What are the lessons learned from Edward’s recovery that can be shared with other medical providers in helping to better understand PANS – and its treatment? Will the academic medical establishment in Rhode Island – the hospitals, the med school, the health insurers – reach out to the Corrigans to shape their own responses the affliction?
Are there outcomes with Edward that may be useful to study in ongoing work with different disorders, such as those in the autism spectrum?
In a world where our news is often composed of car crashes, fires, murders, robberies and attention-getting events, where does the simple, heart-warming story of a young boy overcoming an affliction fit into the news cycle?

PROVIDENCE – Last October, when ConvergenceRI first talked with Jennifer Toone Corrigan and Danny Corrigan about the struggle of their four-year-old son, Edward, who was afflicted with pediatric acute-onset neuropsychiatric syndrome, or PANS, the severe symptoms of obsessive-compulsive disorder – what Jennifer would describe to him as “the old controlling dragon” – were still very much dominant.

Edward was not talking, he was not walking, he was not eating – he had to be fed through a nasal feeding tube. And, he often experienced severe anxieties and mood swings.

What a difference six months has made. On April 10, Edward, now five, walked for the first time in months. He is now eating and talking, and on the road to recovery.

The link below is a video of Edward’s first steps, shared with Jennifer’s engaged online community on Facebook.

In the weeks leading up to his walking again, Edward sometimes shared with his mother, Jennifer, his reluctance to walk. “I don’t want to walk,” he told her. “The floor told me not to. And it’s dirty.”

Jennifer explained to him that she cleaned the floor.

“But you miss spots,” he said.

Jennifer told him the dirt is safe, and that it can always be cleaned up.

He responded: “Think about something else, like how when I am a grown up, I’m not getting old or dying.”

When Jennifer shared the “spectacular news” of her son's return to walking with the New Jersey doctor who has been treating Edward, he said: “Oh my goodness, you just made my day! I take that back. You just made my month! How wonderful! God be praised.”

As Jennifer described her ongoing role: “Now I’m expanding my self-run medical, psychiatric, feeding team, occupation therapy, psychology, nursing, nutrition, and speech pathology to include a physical therapy division.” Because her son’s legs are so stiff as he tries to regain his normal gait, she has ordered a mini-trampoline with a safety handle. And, when she posted this, her engaged online community responded with other suggestions, in support of the family. 

Jennifer also described the observation of repair man who came to the house, observed Edward in action, and said: “That boy is certainly a live wire!”

“If you only knew,” Jennifer responded, adding to her online community: my heart was smiling.

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