A Clinician’s Perspective
In our last issue of ACHIEVE, we told you about a brave two-year-old boy named Asher. His clinician, Mellissa Frietchen, tells us more about Asher’s treatment and the creative solutions that were implemented to address his specific needs. Let’s take a look at the clinical perspective in Mellissa’s own words…
Asher has a series of devices that work together to provide a global treatment plan. I work closely with Asher’s family and healthcare team to ensure that the devices Asher wears allow him to participate in his daily activities with ease. One of the most crucial steps in anyone’s treatment plan is to learn what the patient/family is hoping to accomplish through therapy and with medicine. A collaborative approach with the patient’s healthcare team and family is what sets Transcend apart.
Initially, Asher started with a Benik back brace (used during therapy), a dynamic body vest that provides trunk support and proprioceptive input. At the beginning of Asher’s journey, he received infusions of Spinraza, a medication used in treating spinal muscular atrophy. The brace provided Asher with the trunk support needed to participate in therapy sessions and allow us to see how he would react to the medicine.
A major goal was for Asher to sit and hold his head up. After seeing that the Spinraza was working, we decided to add in two other orthotic solutions for Asher. The first one being a bi-valve TLSO, used for everyday stability. I chose a two-piece TLSO because it’s easier for mom and dad to lay Asher down in the backpiece and allows for more adjustability. I modified the TLSO with an additional overlap on the sides because he tends to go to one side versus the other. Asher’s family and health team also needed to don the device several times a day, so making sure this would be easy for all was a top priority.
Asher also received bi-lateral solid ankle AFOs with inner boots and protective socks. I wanted to provide a style that wraps up and around his foot with the inner boot. Due to his fair skin, the inner boot provides extra protection and keeps his skin from getting irritated. This also provides stability since Asher has a lot of movement. The inner boot locks in with the AFOs for extra support when he’s weight-bearing.
Through these devices, his therapy, and the support of his healthcare team, Asher has made great strides. He can now sit up, hold his head up and propel himself in his wheelchair. Being able to stabilize his trunk allowed us to work on his head and arm control, which are essential milestones.
Clinically, these devices work together to serve Asher’s goals. I communicate with his family on a consistent basis to evaluate where we are at and where we would like to be in the future. Including the family in a treatment plan is essential to a successful outcome. Having open discussions about current devices and talking about possible adjustments allows us to be forward-thinking and innovative.