Brennan was a typically developing little boy the first 6 months of life. At 6 months, mom discovered him unresponsive in his crib; he was diagnosed with uncontrolled seizures in the occipital lobe of his brain. Brennan was placed in a coma for 70 days until they could get his seizures under control. During his 70 days in an induced coma, Brennan also was on a ventilator for 3 different episodes, up to 2 weeks one of those times. Brennan eventually went home on multiple medications to control his seizures, but he continued to have many breakthrough seizures and multiple hospitalizations over the next several months to regain control of his seizures. Shortly after returning home, Brennan became involved in early intervention services due to developmental delays from the prolonged seizures; his primary provider was an occupational therapist. At the beginning of services, Brennan was demonstrating motor skills at the 0-2 month age level, and global delays at the same age level.
Physical therapy was consulted when Brennan and his family got into a new home routine, with the goal of getting him upright and standing. Due to his multiple health needs and ongoing seizures, Brennan was 13 months old when he was assessed for a stander. He exhibited significantly lower muscle tone, poor head and trunk control, and was not able to move on his own or reach to play with toys. His doctor felt he was cortically visually impaired (CVI), so working on motivating activities to acquire head control and purposeful movement and reaching was obviously challenging. The OT on our team was his primary provider because he was on a feeding tube in addition to his developmental delays from his seizure disorder. Prior to the stander fitting appointment, our OT had noted Brennan was unable to bear weight in standing even with maximal assistance, and he could not maintain his head upright during supported sitting.
A supine stander made sense with his poor head control. Brennan’s parents were excited to try out a stander and see how it might help with his development. The goals for standing were to help Brennan improve his endurance to hold his head upright while standing, so that he could also hold his head upright while sitting supported on his parents lap. Brennan’s long-range motor potential seemed uncertain, but we were hopeful that standing could benefit his motor outcome. We wanted prolonged opportunities to get some weight bearing through both his legs and his upper body and shoulder girdle in hopes of improved strength and stability so he could progress his motor development. I also wanted to be sure he had good bone integrity for prevention of fractures throughout his life. I was aware of literature that researched the affect of seizure medications on bone density, showing a correlation of reduced bone density in those on seizure meds. His odds were stacked against him. I was also aware that standing could help improve bone density if the dosage was an hour a day; I was hoping this would negate the impact of his seizure meds.
Brennan started his standing program using a stander for 20-30 minutes at a time depending on his disposition. He was initially tilted backward in 15-20 degrees of supine so he could keep his head upright. Despite the supine set up of his stander, he still had trouble maintaining his head upright the entire 20-30 minutes, often bobbing it forward, and leaning to the side once his head came off the headrest. Brennan demonstrated decent alignment at his ankle – foot that we decided to begin standing without orthotics since the family was still dealing with so many medical appointments and uncertainty with his seizure stability.
Fast forward to 6 months later and let’s look at Brennan’s progress. At 19 months, Brennan was now able to stand fully upright without any head control issues, he could turn his head all directions in response to motivating noisy toys, and stood easily for 30 minutes at a time. He could hold his head upright while sitting supported on his parent’s lap. Brennan continued to have episodes of breakthrough seizures placing him back into the hospital for observation and trial of new medications, but continued to make progress despite the medical complications. During home visits, the OT was able to build in some standing at the couch with support, but we noticed he collapsed into dorsiflexion with his ankle laxity and poor strength. The team decided (with the parents as part of the process), that Brennan would benefit from Ankle Foot Orthotics (AFO’s) to support his feet while free standing. At the same time, he was also improving his ability to use his arms to assist with prop sitting while listening to music and bright colored/noisy toys. He could hold up his head and prop-sit with a bit of support at his elbows so he could sustain the position. He could roll around the floor to explore movement. His loaner stander was being used 30-60 minutes a day for standing when he was having a good day with few or no seizures.
Fast forward another 2 months, Brennan is now 22 months old, he is sitting by himself against the couch, belly crawling a few feet, rocking up onto hands and knees by himself, and getting back into sitting from hands and knees. He can stand by the couch with help to pull up to standing from mom’s lap. Another great piece of news, Brennan received glasses and is able to reach out to get a bright colored or lighted toy. He is smiling and looking at people’s facial features! That CVI diagnosis? Doesn’t seem to be the correct diagnosis after all!
Brennan is going to continue to use the stander until his parent’s feel they can get an hour of standing without using it. He enjoys being upright, he has gained new motor skills from the opportunity to be upright and weight bearing. Standing is also going to be a great supported position to work on his eye hand coordination now that he is showing better vision skills. I can see the end of the road for the stander if this little guy stays healthy, and seizures are under control. Maybe that stander can be replaced with a walker sometime soon!