Edward walks again!
The amazing progress of Edward Corrigan in his recovery from PANS
Are there outcomes with Edward that may be useful to study in ongoing work with different disorders, such as those in the autism spectrum?
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.