The Children's Institute Blog

Krissandra, Chronic Pain And CRPS Awareness

Posted by The Children's Institute - Nov 13, 2017

It was just another day in March 2016 for Krissandra Wiles, another ride on an ATV on her friend’s small farm near Deer Lakes, Pa.

Then their quad hit a bump on the ground.

“My foot went the wrong way,” remembered Krissandra, 19, who now lives in Butler County. “My foot caught the tire and the tire just ripped off my boot and tried to take my leg with it.”

She healed slowly. Then came a random night in August.

“I woke up at 2:30 one night with excruciating pain in my legs,” she said. “I had little things throughout my whole life – I’d get arthritis pain in my knees – but I didn’t have a lot of pain until that night in August.”

Shortly after going to the hospital, she was diagnosed with Reflex Neurovascular Dystrophy (RND), a condition that leads to severe pain in the joints and muscles in children, sometimes following an injury. We are profiling Krissandra today as part of Complex Regional Pain Syndrome Awareness Month.

RND left an imprint. Krissandra dropped out of high school and had to leave a full-time job at a hardware store because of the intense pain she experiences.

“I’m definitely less active now, depending on the day,” she said. “There are days I have to rely on the wheelchair. There are days I have to use the shower chair because I can’t stand in the shower very long.”

For Louise Wiles, Krissandra’s mother, the diagnosis was something for which her years in nursing school couldn’t prepare her.

“Unless it’s something people deal with every day … it’s not something that’s easily diagnosed or easily understood,” Louise said. “For me, I didn’t understand how the body could develop pain out of nothing. It’s like her nerves are confused.”

Krissandra’s time at The Children’s Institute – first as an inpatient, now in outpatient therapy – “was the answer to the prayer that we needed,” her Mom said.

Amy Kerin is Krissandra’s physical therapist. She works with her in The Children’s Institute’s heated, therapeutic pool – where there’s less pressure on Krissandra’s joints when they move.

“And, on land, we target her endurance, strength and balance – and how we take what we’re doing here and expand it to her life,” Amy said. “We need to look at how that exercise is going to fit her life.”

Krissandra’s diagnosis has prompted therapy, as well as activism. This year, she encouraged everyone at The Children’s Institute on Nov. 9, one of her therapy days, to wear orange – the color of CRPS awareness. Many staff members took to the hallways in the vibrant autumn color.

Krissandra also takes part in a Facebook group dedicated to RND, and, in November, is posting an entry on social media every day about her experiences with RND, as well as the stories she’s collected from her peers.

“Every case in unique and what works for one person doesn’t always work for another,” said Krissandra, who described the RND community as one divided over the individual benefits of certain types of therapy, medicine, and nerve-blockers, for example. “It doesn’t seem like my pain is ever really the same. There are times when my joints give out and there are times when my joints lock up. Sometimes, it burns. Sometimes, it feels like it's freezing. The pain is always constantly changing.”

Some sources say a patient with RND experiences pain worse than childbirth. Krissandra believes it.

“It’s just everywhere,” she said. “There are days it hurts in my jaw. There isn’t anywhere it doesn’t hurt.”

To help patients like Krissandra learn to manage their pain and return to their previous level of activity, The Children's Institute offers a comprehensive program that can include Physical Medicine and Rehabilitation doctors, Physical Therapists, Occupational Therapists, and Psychologists. It's the team approach that allows our patients with chronic pain to reach their full potential.


National PT Month: Ethan's Story

Posted by The Children's Institute - Oct 31, 2017

Ethan Theis – who was born, like 1,500 Americans every year, with spinal bifida – has undergone three surgeries in the past six months. Following the last one, which took place in May and addressed scoliosis of his spine, the 13-year-old Lower Burrell, Pa. boy went from assisted walking to no longer being able to sit up on his own.

But, on a recent Wednesday, Ethan, who we’re profiling as part of National Physical Therapy Month, smiled broadly as left his wheelchair and starting swimming laps – back and forth, back and forth – in The Children’s Institute of Pittsburgh’s therapeutic pool.

“The pool helps because I’m not really restrained by gravity, so I can move around a lot more,” said Ethan, as he waded through the water with two yellow weights. “I enjoy [various types of] therapy but this is certainly easier.”

Spinal bifida isn’t slowing down Ethan. He’s been taking part in physical therapy fairly regularly since undergoing surgery on his hip about five years ago. When he’s not in treatment, he’s doing adaptive kayaking or taking part in sled-hockey. (During a recent tournament with Children’s Institute staff, many patients enjoyed knocking unsuspecting therapists onto their sides and watching them squirm – but not Ethan. “I was kind of a softie and gave them tips,” he laughed.)

About a year ago, Ethan also took part in a neuroclinic here at The Children’s Institute that worked on his strength and physical endurance. Physical therapist Megan Fisher has been conducting the clinic, which pairs 30 minutes of physical therapy with 30 minutes of more independent instruction, for a few years now.

“It’s about total body strength – we’re looking at upper body, core, lower body, but also balance, coordination skills, endurance training,” Megan said. “I only have a half-hour so it has to be very focused, goal-driven, based on what the patient and family want right now.”

Neuroclinic treatments can involve everything from treadmill walking to activities for improving gait to ladder drills, depending on the patient’s abilities, Megan said.

“I love the neuro-world,” laughed Megan. “You see these gains, these changes in objectives and measures. When you see those changes in a neurologically impaired child, it’s exciting. You share that information with the parents and that’s when they get those big smiles on their faces.”

Christina Sublinsky, Ethan’s mother, is smiling. But she is straight-faced when she says, only half-joking, “I recommend this place to everybody – for everything.”

“This is the best place to come – they’ve just changed our lives for the better,” Christina said. “The quality of care, the opportunities you get. Ethan is super excited to come here. They just know what he needs.”

Ethan has been coming twice a week to physical therapy since his scoliosis surgery in May. That one surgery, more than others, left him shaken, his mother said.

“I got him in here as soon as I could,” Christine said. “He was scared, too, because he couldn’t do anything he could before. Now, he’s doing laps in the swimming pool.”

Ethan, in the meantime, has interests and takes part in activities like any other teenager. Well, maybe any other ambitious teenager. Inspired “to be a weirdo,” he says, by Lord of the Rings author J.R.R. Tolkien, Ethan is learning the once-touted universal language Esperanto and writing a book where characters speak in a language of his own creation.

“It’s just hard with his diagnosis,” his mother said. “Ethan’s had therapy his whole life. He needs to keep moving.”


Doctor Spotlight: Bethany Ziss

Posted by The Children's Institute - Oct 31, 2017

We conclude our Doctor Spotlight series today by interviewing Bethany Ziss, Developmental Pediatrician.

Stay tuned for our new series, which focuses on therapists and clinicians, and launches in November!

NAME: Bethany Ziss

Q: When did you start working at The Children’s Institute?
April, 2014

Q: Where did you grow up?
New Jersey and then Massachusetts. I lived in New Jersey until I was 8, which is the longest I’ve ever lived in one place

Q: As a child, what did you want to be?
A: When I was about 5, they broadcast open heart surgery on television for the first time. Apparently I came into the room when my father was watching, sat down on the floor, and started asking questions. So I suppose I wanted to be a doctor. I read a lot of books about disability when I was a kid and that has been an interest since I was in preschool. Then I got really into science and thought I might be the one to sequence yeast DNA. But someone else finished that while I was still in college. And I was still reading articles about medicine the whole time. That’s when I realized I wanted to be a doctor all along. I taught school for five years and then went to medical school.

Q: Where did you go to school?
A: How far back do you want: Elementary School: New Jersey and then Massachusetts

Q: What inspired you to go into your field of study?
A: Years of reading about disability when I was younger, and then becoming more involved with the disability community and eventually the neurodiversity movement.

Q: What do you like most about your job?
I helping children with developmental disabilities grow into the best selves they can be.

Q: What do you like most about living in Pittsburgh? 
A: I love being able to walk almost everywhere I need to go, even to work many days. When it’s too far or too icy to walk, I can take the bus. I am a “city girl” at heart.

Q: Do you have any pets?
Not right now. I had pet fish when I was younger and they all had food names, like Peach, Licorice and Lemon Meringue. I am trying to grow a windowsill herb garden, if plants count.

Q: Do you have any hobbies?
A: I collect hobbies. My main ones these days are Scottish Country Dance, cooking and solving crossword puzzles. I also love Broadway musicals and am a huge Trekkie.

Q: What is your favorite sports team?
A: I can’t tell one sport from another.

Q: Who is your favorite musician?
A: Most of the music I know was written and performed before I was born.

Q: With what superhero do you identify? Do you have superpowers?
I’ve never really followed any specific superheroes. Years ago, an acquaintance in the disability community said that problem solving was the disability superpower. I think she was probably right. This tends to mean doing a lot of advocacy and using a lot of duct tape.

Q: If you were stranded on a desert island, what three items would you bring?
The usual answers are water, a fire-starter and a radio to call for help.

Q: If you were given a $1 million check to give to one group or charity – other than The Children’s Institute – who would get it?
I’m on the steering committee of the Pittsburgh Center for Autistic Advocacy, which is an organization run by autistic people to advocate for the needs of autistic people of all ages in Pittsburgh. We have been working on self-advocacy training, promoting sensory friendly events for children and adults and advocating for the rights of disabled people in Pittsburgh and across Pennsylvania. PCAA’s main purchases so far have been a portable wheelchair ramp and bathroom signs, and has been reliant on grants to fund ASL interpreters for events. So $1 million dollars would go a very long way.

Q: What has been your strangest job? 
My first job was teaching magic to children in a summer program when I was still in high school myself. This is the one people always ask me to explain when they see my resume. “Biology teacher” isn’t a strange job but there were some strange moments during my years teaching at a residential school for teens with behavioral needs. One winter, I was snowed in with my students. Also I have been on a field trip to every museum in Delaware and Maryland including the Ward Museum of Wildfowl Art.

Q: What do you want to do when you retire?
Do I have to? I hope to be able to keep working with children with disabilities as long as I can.

National PT Month: Gross Motor Group

Posted by The Children's Institute - Oct 30, 2017

For two of the six years she’s been at The Children’s Institute, physical therapist Jen Brilmyer has helped coordinate gross motor group, which exercises children’s physical skills, as well as their social ones.

Dorian Rice Haigh playing kickball“Really, we serve all different types of children,” Jen told me, “but primarily we’re looking at children who have difficulty in issues engaging in skills with peers, such as ball skills, coordination, endurance skills – things like that.”

In addition to regular physical therapy, the gross motor group engages children – typically ages four to 10 – in groups. But, Jen stressed, she and other clinicians “tailor the activities to meet the needs of each child.”

“The thing that makes gross motor group unique is they’re participating with their peers,” Jen said. “We want them to do things that typical kids their age do.”

For Dorian Rice Haigh – a nine-year-old who is on the Autism spectrum and has Ehlers Danlos syndrome, which causes issues with his muscles and joints – gross motor group was “perfect, not too many people, not too little.” And, true to The Children’s Institute’s mission of engaging children in meaningful, sometimes playful, therapy, it was a lot of fun.


“Whichever exercises the kids chose is what they worked on most,” said Dorian, who liked to pick kickball activities. Others chose basketball skills – or soccer.


“It was pretty helpful,” he said, with a big smile. “I learned to play line-tag.”


Dorian’s mom, Cindy, said he’s been receiving physical and occupational therapy since he was three or four years old.

“They’re tremendous at The Children’s Institute – they get him,” Cindy said.

“Balance is an issue to him and he’s much, much better with that now,” she added. “Standing on one foot, standing on the other foot. Before we knew what was going on, he’d fall and bruise so easily.”

“Now, he’s doing great.”


Rock-Painting at The Day School

Posted by The Children's Institute - Oct 30, 2017

Lynne White stood in front of her students and some waiting rocks at The Day School of The Children’s Institute on a recent Tuesday and gave the instructions.

“We’re going to paint rocks,” she said. “Why are we going to paint rocks? One, because it’s fun. And, two, we’re going to hide them and there’s going to be a message. We’ll hide the rocks and other people can find them. We’ll talk to them on the computer and we’ll make new friends!”

And, with that, roughly 10 students grabbed for tubes and tip-proof cans in a host of colors – pale blue, cactus green – and started painting away.

One girl painted proudly in blue glitter. Her teacher’s aide, Sally Stewart, said she had painted with her before.

“She’s a pro,” she laughed.

Student Mykenzie Brush already had ideas about where she wanted to hide her rocks: the school bus and two nearby Squirrel Hill businesses – Dunkin’ Donuts and Rita’s.

“You think we could find a spot in the garden?” Lynne asked her.

“Yeah!” blurted out Mykenzie enthusiastically.

“I bet we could,” responded Lynne.

Teachers said the students will start by hiding the painted rocks around Children Institute’s Squirrel Hill building, then extend beyond our borders. They expect to start hiding the around Squirrel Hill soon.

Day School Speech-Language Pathologist Emily Kaplan is doing the painted rock project with about 20 students in three classrooms. She heard about the project through the news but didn’t go forward with it here at The Children’s Institute until she was urged by a fellow staffer.

“The older class goes on community-based outings so I thought it would be really fun,” Emily said. “It’s a good way for them to get out and interact with the community.”

Found one of the rocks? Go to to send back a message!


Kayaking and National PT Month

Posted by The Children's Institute - Oct 27, 2017

Pittsburgher Ann Lapidus became blind 10 years ago due to medical complications but that hasn’t stopped her from tandem-biking or water-skiing. In August came a new activity: kayaking.

“I really enjoyed it,” Ann said. “It’s one of those things that could be really relaxing, like moseying down the river, or you could make it really physical. You choose the pace.”

Recently, Ann and her seeing partner, Jason Cade, trekked to The Children’s Institute’s heated, indoor pool to gain more experience with kayaks in a class provided through our partnership with Venture Outdoors. We are highlighting the adaptive kayaking program as part of National Physical Therapy Month.

For Venture Outdoors volunteer Trip Leader Joel Johnston, an American Canoe Association (ACA) certified kayak instructor, who coached Ann and Jason on paddling during a more than two-hour, one-on-one session Oct. 9, it’s a simple equation.

“There are so many great places to paddle in Pennsylvania, so many great rivers,” he said, “and we have just under a dozen ACA-certified kayaking instructors working with Venture Outdoors .”

Future adaptive kayaking sessions will be held on a Saturday morning in November, and then monthly from January through April. The classes aim to provide people with physical disabilities an opportunity to discover what outfitting is necessary to get them paddling comfortably in a kayak. More information is available on the activities calendar at (Interested volunteers also should contact the organization.)

Christy Neltner, a physical therapist at The Children’s Institute, has been leading adaptive kayaking programs like this one since taking part in an Adaptive Paddling Workshop at Bay Cliff Health Camp in Michigan and training with the ACA.

“Water is the ultimate equalizer,” Christy said. “In this program’s boats, you don’t know which people are the staff and which are the people with disabilities.”

Christy started fundraising for the adaptive kayaking program in 2010 and participants took part in a session for the first time in 2014. She says kayaks can be modified for those with physical limitations in various ways – outriggers can help a person with seizure disorders avoid tipping in the event of an incident, or pivot posts can be installed for people who need assistance gripping a paddle or doing repetitive motions.

“Sometimes, we get participants who’ve never been in a pool,” she said.

The level of difficulty for the workshop ranges from easy to advanced based on the ability of the participant, according to Venture Outdoors. Classes are limited to four participants and have a one-to-one or two-to-one Trip-Leader-to-participant ratio based on the participant’s needs. You must be at least 12 years old to participate.

For Joel, the classes are just the beginning. He hopes to see people with physical limitations attending Venture Outdoors public outings and Kayak Pittsburgh rental locations. With advanced notice, the organization can work with an individual to modify a kayak so they can participate on outings or rent a kayak.

“That’s kind of where we’re going with this,” Joel said. “The idea is not to have people segregated.”

From watching Ann get into her yellow kayak and paddle last week, you wouldn’t have had any idea she had physical limitations – and that’s the point.


National PT Month: Learning From Yoga

Posted by The Children's Institute - Oct 26, 2017

Physical therapist Katherine “Kit” Concilus sits on the blue mat, her legs folded symmetrically in front of her, and – with two teenage Children’s Institute patients in tow – she begins the yoga class.

“Eyes closed, lips together, teeth apart. Now, use your mind’s eye to explore the inside of you. Begin by looking at your own brain, imagining that you can actually see it. Now move your attention to your skull, and the muscles of your face, your forehead, softening any areas of tension.” Kit intoned, her voice gentle, even-keeled and, yes, somewhat soothing in this dimly lit room. “You are listening to your body and it will tell you what it needs.”

Kit has been practicing yoga for some 20 years and leading yoga sessions at The Children’s Institute for nine of those years. For patients with chronic pain, in particular, the sessions – held once each week, on Monday afternoons in the Multi-Purpose Room – have proven valuable as a part of physical therapy.

“We practice breath work throughout each session. We have educational handouts to reinforce our instruction.” Kit said. “And we catch patients at all different levels of their pain journey. Our hope is that our patients will learn these important skills and use them for the rest of their lives.”

Yoga instruction includes supervised practice of postural training, breathing techniques, stretching, strengthening, coordination, balance training and guided relaxation, Kit says in a letter she send to participants. Emphasis is placed on coordinating the breathing pattern with movement and paying attention to the details of body alignment. Activities can be modified as for individuals, while keeping a positive, quiet atmosphere.

Who benefits from the classes? People with diagnoses ranging from RND and chronic pain to those with brain injuries, developmental delays, and cerebral palsy are targeted. And the results are looking good.

Dozens of patients took part in the classes between 2014 and 2016, and metrics showed Functional Disability Inventory scores – a 15-item instrument originally developed to assess disability in children and adolescents with chronic abdominal pain – improved by 56 percent, after taking the class, in one year alone.

That’s reason enough for Kit to keep up the classes.

Like she says, anyone can tune in to the messages their bodies are sending them.


Students From Two Squirrel Hill Schools Meet

Posted by The Children's Institute - Oct 25, 2017

Students from The Children’s Institute’s Day School and St. Edmund’s Academy gathered Tuesday at the Halloween-themed party as part of a social-skills program to celebrate differences and learn from each other.

Anthony Pipkin, 10, a St. Edmund’s Academy fourth-grader, ate the candy corn but said it “tasted like wax.” Amiyr Mack, 8, a student at The Day School of The Children’s Institute, wanted potato chips and cookies. Emma Ford, 8, Amiyr’s peer, was more interested in “being with new friends” and less interested in snacks.

But, one thing bound them all.

“My favorite part is certainly the human element,” said St. Edmund’s teacher Robin Colin, who brought two classes of fourth-graders from her school to The Children’s Institute. “They’re the same on the inside – they all want to feel connected, they all want to have friends.”

Friendship played a central role in the Halloween shenanigans, as children from each school partnered up as they sought to bowl over a tower of ghost-adorned toilet paper or play a round or two of “Hot Pumpkin.” And there were more than enough orange-crème-filled Oreos, candy corn, and potato chips to go around.

Just ask Emily Hummert, 10, of St. Edmund’s.

“It’s fun,” she told us, as she scored five candy corns across in Halloween Bingo. “I want candy, more candy.”

“I’m having fun, too,” said Ryleigh Tardy, 9. “This time, we played bingo!”

Stacy Porter Smith, a social-skills therapist at The Children’s Institute, kicks off the initiative by visiting St. Edmund’s – bringing wheelchairs or testing the students’ Alternative and Augmentative Communication (AAC) skills on an iPad with the program Proloquo-To-Go.

“It’s disability awareness,” Stacy said. “When I go to schools, I challenge them and say, ‘When you see that kid sitting all alone on the playground, go over. When you see a kid in a wheelchair, don’t treat them differently. You’re a kid. They’re a kid.’”

Robin said, at the beginning of the partnership each year, some of her students will be a little unfamiliar with children with special needs, and there are “some deer-in-the-highlights moments.”

“By the end of the year, they’re playing together, they’re holding hands, they help with snack,” Robin said. “I really look forward to the comfort level of our students growing as the year progresses.”

Robin said she’s been taking part in the program with The Children’s Institute for all of the seven years she has taught at St. Edmunds, a K-8 school.

“The neat thing is, by the end of the year, the staff is just standing there,” Stacy said, “because the kids, they just grab each other and say, ‘Let’s go!’”


National PT Month: Torticollis

Posted by The Children's Institute - Oct 24, 2017

After launching, in 1994, the Back to Sleep campaign – a National Institutes of Health initiative encouraging parents to sleep infants on their backs to reduce risk of sudden infant death syndrome (SIDS) – incidence of SIDS dropped more than 50 percent. But what clinicians might not have anticipated was a spike in cases of torticollis, a condition – which we are profiling today as part of National Physical Therapy Month – where the head tends to be rotated to one side and tilted to the opposite side. In infants, it is generally congenital muscular torticollis.

Torticollis therapyBecause infants now are sleeping on their backs, muscles in the neck and upper back aren't stretched and strengthened as much as if they were sleeping in a prone position, or on their stomachs.

“We’ve gone from generations of infants who’ve spent most of their time on their bellies to generations of kids who spend most of their time on their backs,” said Theresa Miller-Ferri, a physical therapist at The Children’s Institute. “If they’re staying in the same position all of the time … that can cause other asymmetries in the head and face, and elsewhere in the body that can impact development.”

“If left untreated, it’s not going to go away on its own,” she added.

Laura Caton came to The Children’s Institute earlier this year, when her daughter Eleanora was just two months old. She had noticed there was something wrong about the way her daughter was positioning her head shortly before Eleanora’s two-month well visit with their pediatrician. Four months later, the problem is resolved almost entirely.

“The way I would hold her, her face was always sort of stuck in my shoulder [and] that would make her cry,” Laura said. “Now, she can look over my shoulder – and look both ways.”

“A lot of the therapy is so subtle – [Theresa] seems like she’s playing when she’s working with her – it’s pretty cool,” said Laura, who also is Mom to big sister Reese, 12, and big brother Ezra, three. “I never feel it’s uncomfortable for her and it’s made such a huge impact. Within even just a couple of weeks, I started noticing a change.”

“I look forward to going. I look forward to her progress,” she added.

Laura recently introduced Eleanora to a family friend who works with infants with torticollis.

“She never noticed. She was surprised when I told her she had it,” Laura said. “That’s how much she’s improved …. She looks both ways. She has terrific range of motion.”

Theresa said it’s not uncommon to see those gains – as long as caregivers identify the problem and address it early.

“The earlier, the better,” Theresa said.


Marking Respiratory Care Week

Posted by The Children's Institute - Oct 23, 2017

Brady Lumpkin is set to be discharged from The Children’s Institute tomorrow, the second day of Respiratory Care Week.

Patient Brady receiving respiratory careBut to Brady, a respiratory care patient who soon turns 25, the day is yet another step in a long journey.

The West Virginia by-way-of Oklahoma native was riding April 30 as a passenger on an all-terrain vehicle, or ATV – something he’s been doing his whole life – when his driver hit what he called “a good-size rock.” He suffered a spinal cord injury and lost use of his limbs. But, since coming to The Children’s Institute, he has made strides.

“He came with a trach and on full-ventilator support,” said Respiratory Care Clinical Supervisor Lyndsi Yarkosky, RRT-NPS. “Within a few months, we were able to fully wean Brady off of the vent. Along with his continuous diaphragmatic pacer, he uses a Passy-Muir valve during the day and his trach mask at night.”

Brady, for one, has appreciated each step along the way, he told me as speech-language pathologist Katie Hartman fed him nectar-thick liquids.

“It’s been tough but I’m making progress,” Brady said.

“Really, seeing his progress is awesome,” added Tiffany Oldfield, 22, Brady’s girlfriend.

Katie said much of his progress in being able to communicate is due to the fact that he also weaned off what is known as a cuffed trach.

“His voice was a lot better once we got rid of that,” Katie said. “His vocal folds got more sturdy.”

The goal of the nine-person respiratory care team, in fact, is to wean off those breathing aids, Lyndsi said.

“We’re pretty successful with weaning,” Lyndsi said. “Along with the doctors, we’re collaborating with the patient and the providers for weaning – weaning off oxygen, weaning off a ventilator, and working toward decannulation [no more trach] in many cases.”

The team takes its job – and things like infection control – seriously and it shows. Lyndsi said she cannot recall a single incidence of ventilator-associated pneumonia during her eight-year tenure here.

“And a large part of our job is also to provide education and train the family,” she added.

In Brady’s case, that’s Tiffany, who will care for him when the two return to West Union, W. Virg. this week.

“There’s been tough times,” Tiffany admitted.

But, tomorrow, there’s even more reason for hope.


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