KenCrest Early Interventionists help one Pennsylvania family overcome Torticollis through occupational and physical therapies

By Sydney Kerelo

Born seven weeks premature, Jenna Shaffer’s son Dalton receives occupational and physical therapy through KenCrest’s Early Intervention program.

At the beginning of his life, Dalton spent five weeks in the NICU, and while there, Shaffer began noticing signs of Torticollis—often known as Wryneck, which is a twisting of the neck that causes the head to rotate and tilt at odd angles.

According to Johns Hopkins Medicine, the exact cause of Torticollis is unknown, but it’s thought to be congenital or acquired. Torticollis symptoms include spasms of the neck muscles and the awkward position of the chin.

“When we went to his first doctor’s appointment, the pediatrician confirmed my suspicions,” says Shaffer. “She suggested that I get him evaluated by Early Intervention not only for his torticollis but also because his head was misshapen, he wasn’t hitting milestones, and he was inconsolable.”

One of the Early Intervention programs suggested was KenCrest, and Shaffer met with two of our interventionists, Holly and Taylor, to begin Occupational and Physical therapy with Dalton. The duo first suggested fitting him with a cranial helmet to reshape his head.

He goes every two weeks to adjust it, and since he started wearing his helmet, he’s improved drastically. He can now balance himself and has more movement abilities. According to Shaffer, Dalton’s head initially had a large knob on the front of his skull, impeding him from rolling over, keeping his neck up, and eating and sleeping correctly.

“At first, the recommendation after his evaluation was to have OT every other week and PT weekly,” says Shaffer. “Taylor immediately said he needs to go more often, and she got approved for weekly visits.”

Taylor comes into Shaffer’s home once a week and sits with the family for an hour to observe Dalton’s behavior and offer support. During these sessions, Taylor teaches Shaffer the best ways to help Dalton while doing everyday activities. For example, if Dalton is lying on the mat, she will observe him and let Shaffer know if he is reaching a milestone and offer ways to help him achieve it.

“She’ll have me show her things that we do, but I’m more of the one manipulating him because I am the one with him all the time,” says Shaffer. “In the beginning, we tried to find the best time for her to come when Dalton got sleepy. She jumped in and said, ‘let’s work on sleeping,’ and she helped me figure out the best way to swaddle him and use his binky, and that’s what we spent the hour doing that day.”

“I always joke that it’s kind of like a mommy therapy session because I give her updates on both Dalton and my experiences with the techniques,” adds Shaffer. “It helps both Dalton and me.”

One day Shaffer recalls Dalton refusing to eat at all, and she texted Taylor asking her for advice on what she could do, and Taylor responded immediately. She walked Shaffer through different steps to get him to eat again, and it worked.

Dalton has now overcome feeding challenges and is working on techniques to help with naptime. Right now, Dalton struggles to sleep during the day, and Taylor allows Shaffer to fill Dalton’s awake time with interactive activities, so he is tired enough to sleep at naptime.

“I was very nervous about getting Dalton involved in Early Intervention because he is so tiny,” says Shaffer. “But from my first phone call with the caseworker, everything’s been seamless and reassuring. From the evaluation to the home visits to the communication. I have never felt silly, or like I was doing something wrong with her, she’s genuine and truly cares about him.”

Not only does Taylor focus on including Shaffer in the therapy, but also her oldest daughter. Shaffer’s daughter is home from school a few days a week, and on those days, Taylor will encourage her to play with Dalton to help feed him and create a relationship between the two.

Since Taylor began working with Dalton, he has improved drastically. His head shape is no longer preventing him from progressing with his development; he is eating correctly and progressing with his sleeping habits.

“I believe Dalton has made strides quicker than he would have if he didn’t get Early Intervention,” says Shaffer. “I am thrilled with how things have progressed with him and everybody who has worked with him.”

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