The Time OCD came to visit…and didn’t leave… 

By Kerry Elson 

My family’s story began on February 8, 2012.  On that night, I tucked my then 9 yr. old son Hayden into bed and went to sleep myself.  Little did I know that was the “last” time I would experience that version of Hayden.  When he woke up the next morning, he was completely different.  He couldn’t get ready for school as he usually did, he cried for seemingly no reason and he refused to eat. While he did eventually get to school that day, call it mother’s instinct, but I knew something was off.

Fast forward several weeks…Hayden was having trouble in school (and he never had before), he wasn’t interacting with his friends as he had in the past, and teachers were noticing too.  I remember his 3^rd-grade teacher commenting that during recess, she would watch him walk the yellow line on the blacktop, pacing back and forth very robotically.

Hayden experienced a form of OCD called PANS/PANDAS, which involves many distinct characteristics.  Some of these include dramatic sudden-onset OCD, big changes in school functioning, especially math and handwriting ability.  He also became increasingly emotional and had severe separation anxiety.  Despite having many of these clinical presentations, we were told repeatedly that he “just” had anxiety/OCD.

For the next nine (yes, NINE!) years, Hayden’s anxiety waxed and waned. He was prescribed a low dose of medication, which returned him to his baseline.   He was doing all the things a typical child of his age should do, sometimes with a tremendous amount of anxiety, but he was doing them. Yes, he had his quirks but we just thought of them as part of who he was, part of his personality.  And he was functioning.  Fast forward to Hayden’s junior year of high school, he was, in every sense of the word, “living his best life.”  Hayden had just finished working his first summer job, had gotten his driver’s license, was doing well in school, was socializing with friends on a regular basis and was trying out for the Mason High School baseball team.  Hayden was firing on all cylinders…until April 21^, 2021.  Until he wasn’t.

On that day, Hayden could no longer contain the verbal tics he had been experiencing (but had not told us that he was) and even addressed his English teacher using a curse word.  He immediately apologized but realized that with that simple act, he and his OCD were no longer the well-kept secret he had worked in earnest to keep so private.

The following weeks and months were simultaneously a blur and the most vivid memories of my entire life.  Hayden was unable to return to school in any form or fashion after April 21.  He wasn’t able to attend his own high school graduation and began weekly therapy sessions with an outpatient therapist.   He was admitted to the inpatient hospital at Lindner Center three different times, and had two surgeries and 8 rounds of plasmapheresis at Nationwide Children’s in Columbus.  Hayden was admitted to West Chester hospital in severe starvation ketosis after refusing to eat anything at all for 16 days, and while there received the first 2 of his eventual 21 IVIG infusions.  During this time, my husband and I were also forced to go before a probate judge to ask for guardianship of Hayden’s medical decisions as he was over 18 yrs. Old.  We sought the counsel of our parish priest to ask the excruciatingly painful question of whether Hayden could still go to heaven if he starved himself to death.  We cried ourselves to sleep more nights than I can even count.

May 5, 2021 was a magical day.  Yes, Hayden was lying in a bed in the inpatient unit at Lindner Center of Hope, but we received some welcome news.  We were told that Hayden did in fact have PANS, the diagnosis we long suspected but were forced to abandon years before in part due to unbelief on the part of clinicians and medical advancements that had not yet been discovered.  My mother’s heart was gratified beyond my wildest dreams-there was an explanation for everything that seemingly made little or no sense.  That explanation shook us to our core, however.  Hayden had massive brain inflammation caused by an autoimmune illness.  In short, his body was not recognizing infectious triggers, and they were allowed to cross his blood-brain barrier.  His brain was, in the words on his psychiatric nurse practitioner, “a raging inferno.”

As mentioned previously, this period of our lives was messy.  There were many, too many actually, really hard days.  There were quite literally weeks which turned into months that Hayden never left the house-often not leaving the couch or the safety of his bedroom.  He wouldn’t (or couldn’t) engage with the outside world, hold an intelligible conversation and frequently spent the majority of his awake time ruminating.  But, eventually after 11 months (ironically on April Fools’ Day), he began a part-time job at Office Depot, which incidentally he interviewed for in a tattered NASCAR tee shirt.  This gig lasted about 5 months until he announced (literally out of the blue) that he intended to go to college in the fall!  After Herculean efforts to make this happen (since we had missed every deadline possible in the application process!), he started classes at UC Blue Ash in August 2022.  He spent a semester there while continuing to live at home and having us drive him to/from school daily.

Early winter 2023 brought more unexpected developments…Hayden was forced to take a pause in his college studies as he made the momentous decision to go to residential treatment to “take his life back from his OCD.”  In reality, we had been considering Rogers Behavioral Health Center for Anxiety and OCD in Oconomowoc, WI for some time, but needed to wait until Hayden himself made the decision.  We knew this treatment would not be successful if he felt he was coerced into it.  It had to be his own decision.  The process of admission was grueling, with lots of ups and downs and an uneasy wait, but ultimately, we got the news that he had been accepted into the program.  It was indeed miraculous, but also extremely sobering as we were told (in not so many words) that since there are only 28 beds in the facility, they only accept the most extreme cases.  We were all desperate.  We could not continue existing in the way that we had been for the previous close to two years.

Hayden spent 98 days in residential treatment followed by a month in a step-down program called Partial Hospitalization.  He gained tremendous insight into all things OCD and most importantly, began to understand his own OCD in a way he had never been able to previously.  Within a week of returning home, I was listening intently to a conversation Hayden was having with his 26 yr. old brother, who has a more stoic, pick-yourself-up-by-the-bootstraps approach to life…” You know I have OCD, which is a mental illness, and you just can’t exercise your way out of it!”  Shocking.  He understood.  There was tremendous hope!

In August 2023, Hayden moved to Clifton to live in an on-campus apartment with three unknown roommates.  He resumed his pre-business curriculum right where he had left off eight months earlier.  He has not only figured out how to live on his own while being a college student, but he continues to meet with his outpatient counselor on a regular basis.  He has hard moments and hard days.  Usually, however, his hard days don’t turn into hard weeks like they used to.  Today, unwittingly, he even shared some good news with me, a sign of tremendous progress in his personal battle with OCD.  “I just took the easiest math test of my entire life!”  I just smiled to myself because we both knew that this was so much bigger than a math test.

For more information on PANDAS/PANS, click here.