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Get up and Go program helps teen move from pain to possibilities

"Going into the forest for a run.”

Lauryn’s mother, Jodi, read the text from her daughter in total disbelief.

She read it again and assumed Lauryn had dreamt she was running through a forest.

Wanting to be supportive, Jodi replied, “OK, up you get, have a great day – see you soon – love, me.” 

Jodi was convinced Lauryn had imagined her run because just three weeks earlier, she limped into Holland Bloorview in agony, barely able to walk. 

In fact, for more than a year, her daughter had endured constant foot pain that was often excruciating.

In February 2016, Lauryn was diagnosed with Chronic Regional Pain Syndrome (CRPS) – a condition that most often affects a limb, usually after an injury. 

The key symptom is prolonged pain that’s been described as a burning sensation, or as if someone were squeezing the affected limb.

In Lauryn’s case, it all started with an innocent fall on a Florida beach during a family vacation in March 2015. 

Her foot swelled a little but then improved shortly after. But two weeks later the pain and swelling returned, and Lauryn’s life changed. 

A world of hurt

For over a year she was in constant pain. Her foot would often swell and turn purple. It was so painful, she was afraid to touch it or put a shoe or sock on. 

After she showered she wouldn’t even place a towel on her wet foot for fear of triggering pain. 

Visits to several doctors and specialists followed. Most could do little to nothing for her, adding to her frustration and anxiety. 

Even after her diagnosis, different physiotherapy programs, pain clinics and medications gave her little relief.  

“I was so down,” said Lauryn. “Every time I was in pain, I would just shut down and that was hard because I’m a really social person.”

As a result she missed months of school and began having panic attacks.  

Lauryn got up and went

In August 2016, Lauryn came to Holland Bloorview for Get up and Go: Persistent Pediatric Pain Service.

It’s a rehabilitation program aimed at helping a child regain function and return to everyday activities. It consists of a two-week inpatient stay followed by a two-week day patient program. 

The Get up and go team includes a dozen specialists, including a psychiatrist, physiotherapist, social worker, a therapeutic recreation specialist and other experts. They create a detailed plan to help each participant reach personal goals.  

“The first night, I was really nervous,” said Lauryn who was also apprehensive having seen so many specialists who were unable to help her. 

Each day she followed a strict schedule of activities and therapies  that addressed both the physical and mental aspects of pain management.

“The first week, I thought, ‘I don’t know why I’m here, this isn’t working,’” Lauryn admitted. 

Regaining her footing

But by the second week, she started to notice some changes, both in her pain and in her mood.

One by one, breakthroughs began to happen. Perhaps the biggest was being able to touch her foot again. 

“I wasn’t able to touch my foot for a year,” said Lauryn. “When I figured out that I could that, that’s when the floodgates opened.”

Next was being able to cover her foot. She remembers telling her mom, “I can keep my shoe on! I can wear socks! I got a pedicure!”  

After that came activity. It started as slow bursts of light jogging down the hall, which then turned into full running through the hospital’s Spiral Garden and surrounding forest area, leading to the text that Jodi has kept to this day.  

Lauryn remembers the sheer exhilaration of taking her first pain-free strides. It was a surreal moment with Lauryn looking down at her legs thinking, ‘Oh my God, I’m running!’

With a solid repertoire of pain management techniques, Lauryn returned to school last fall and loved being able to focus on her studies rather than her pain. (Proof of this was her stellar grades.)

“I still have some pain but now it’s way more manageable,” she said. “I now know how to get rid of it because of this program.”

"The Get up and Go team are truly angels,” said Jodi. “They listened to Lauryn, supported her, pushed her and challenged her. They were her cheerleaders, even when they were at their toughest, and her advocates when she needed them to be.”  

Her best foot forward

 

Today Lauryn’s future couldn’t be brighter. 

Now 17, she is set to graduate from high school next year and is currently playing on her high school rugby team! (She has her sights set on studying kinesiology or sports medicine at university.)

She even has a small tattoo on the ankle on her injured foot – a small treble clef that’s a symbol of her love of music. 

Grateful for all that Holland Bloorview has done and wanting to give back, Jodi joined Holland Bloorview’s Family Leadership program as a volunteer. 

She and Lauryn have since developed a Get Up and Go program toolkit for future participants so that families know exactly what to bring and what to expect.

“It sounds like a cliché but Holland Bloorview saved my life,” said Lauryn. “It got me back to who I am.”