When Kulukulutea was 1 and learning to walk, her mom, Kaori, noticed that she consistently “tiptoed,” using only the balls of her feet. As she grew older, she would fall forward whenever she attempted to walk with her feet flat on the ground. Suspecting a medical issue, Kaori took her to see a pediatrician, who reassured her that toe-walking was normal.
Toe-walking is common in toddlers who are just starting to walk, and many children outgrow it. But some require medical care to overcome it. However, the cause of the condition isn’t always known, and the success of treatments can be varied. To learn more about the best treatments for toe-walking, Shriners Children’s has launched a research project involving nine of its locations.
It wasn’t until Kulukulutea had her preschool physical that her doctor recommended that she have a consultation with medical staff at Shriners Children’s Hawai’i. “I was nervous at first because I thought Shriners Children’s was for specialized surgeries only,” said Kaori. “But when we went there, the staff was so welcoming and full of ‘aloha.’” (The Hawaiian spirit of aloha is one of fellowship and love.)
Upon examination, Kulukulutea was diagnosed with severe toe-walking, a condition that sometimes has no exact medical cause. Much to the relief of Kaori and her husband, Kalavi, Kulukulutea’s situation was treatable. Over the next several months, she had weekly hospital visits to stretch her muscles and tendons, and underwent casting and bracing of her feet to encourage a normal gait.
“The staff was awesome,” said Kaori. “They educated and guided us through the process, set expectations and made sure Kulukulutea was always comfortable.”
Staff also helped with the little details of her care, including tips on how to properly use a walker, navigate stairs and practice proper foot hygiene. “Kulukulutea calls everyone at Shriners Children’s ‘doctor,’ because they fix things,” Kaori chuckled.
Now 5, Kulukulutea beams with affection. She cares for their crops of taro, ulu and lauhala daily on their family farm in Punaluu. She takes time to visit her kupuna (grandparents and family elders) with flowers and homemade bread. “She’s so full of energy and is such a girly girl,” said Kaori. “When she’s not jumping off tree stumps on the farm, she loves playing with her dollhouse.” And Shriners Children’s may be her biggest dollhouse of all. “She thinks Shriners looks like a magical castle – so she calls it the ‘castle hospital,’” said Kaori.
The mysteries of the cause
While toe-walking is common in healthy, developing children, and toddlers usually grow out of it, if a child is still toe-walking after their second birthday, a doctor should be consulted. That consult should happen sooner if there is poor muscle coordination, stiffness in the Achilles tendon or the child’s leg muscles are tight.
The condition is diagnosed as “idiopathic” when the cause is unknown. But in some instances, toe-walking may be attributed to other diagnoses. For example, if the Achilles tendon is too short, it can keep the heel from touching the ground. In some people with cerebral palsy, toe-walking may be caused by abnormal development or problems with movement or muscle tone. Muscular dystrophy may be to blame if the child started out walking normally before the toe-walking began. It has also been linked to disorders on the autism spectrum. Children who are toe-walkers may also have an increased risk of falling and could face ridicule in social situations.
An opportunity to look for answers
Jeremy Bauer, M.D., orthopedic specialist at Shriners Children’s Portland, calls treatment of idiopathic toe-walking a great research opportunity and is starting a new study to do just that.
“It’s sometimes hard to tell the difference between causes; they all look very similar,” he said. “We take a look at how the child is doing, and now we can use our research study to differentiate between neurological causes versus idiopathic toe-walking.”
This collaborative research project will help inform pediatric orthopedic specialists in making care plans for children with toe-walking for whom the cause is unknown. The study involves nine Shriners Children’s locations, which allows for an incredible reach and patient diversity available through the Shriners Children’s system and helps ensure the optimal results for patients.
The study will enroll 180 patients who will receive a motion analysis assessment and a genomics evaluation. The researchers will examine surgery versus casting for the treatment of idiopathic toe-walking. The genomics portion of the study will examine whether there is a genetic link to idiopathic toe-walking.
Dr. Bauer recognizes that there are gaps in understanding why some treatments work and others don’t. “This will help us find out what really is the best way to treat each of our patients,” he said.
“This effort highlights the strength of collaborative efforts within our system,” said Bruce MacWilliams, Ph.D., motion analysis center director for the Salt Lake City location. “In a very short time period, we will be able to compile the largest and most comprehensive dataset of children with idiopathic toe-walking.”
The toe-walking study involves nine Shriners Children’s facilities in the following locations:
- Chicago, Illinois
- Galveston, Texas
- Greenville, South Carolina
- Lexington, Kentucky
- Philadelphia, Pennsylvania
- Portland, Oregon
- Sacramento, California
- Salt Lake City, Utah
- Springfield, Massachusetts
The toe-walking study is accepting participants. If you think your child would be a good candidate, please contact Shriners Children’s at 971-544-3377.