Run, Sing and Giggle with Agape and her Orthoses
Agape
Diagnosed with a rare form of Down Syndrome
called Mosaocism (mosaic) Down Syndrome before birth.
Anna’s voice was full of joy as we spoke about her daughter Agape at her recent follow-up consultation. That could have had something to do with the fact that Agape was singing in the background throughout most of our chat together.
The first time I met Agape was when I worked at the front desk of the Boundless clinic. I remember a young girl with a big personality, great smile and short childish pigtails to match. Since then, nothing seems to have changed much. Anna describes Agape as a child who is full of life—joyful, compassionate and reflective.
“She doesn’t hold back and wants to engage with the world around her, “the proud mother told me. “Once Agape developed a bad fever and had to be rushed to the ER. With bold strides, she walked up to the reception desk stating ’My name is Agape, my doctor works here and is really handsome, I have allergies to peanut butter, and yes I have Down syndrome.’”
Mosaocism (mosaic) Down Syndrome
Agape was diagnosed with a rare form of Down Syndrome called Mosaocism (mosaic) Down Syndrome before birth. As a teacher who has worked with children with special needs, Anna was not shocked when she received the diagnosis. She did,however, have lots to learn in her new role as mother, teacher, doctor and nurse to a young child coping with the condition.
The Orthotic Difference
Like many children with Down syndrome Agape has low muscle tone and flat feet and was referred for an Orthotic assessment. Before Agape’s third birthday she would receive her first pair of short braces from Boundless Biomechanical Bracing (we call these supramalleolar orthoses, SMO for short).
“They made an instant difference” says Anna. Whereas before, Apage would usually walk with her legs wide apart, often falling as a result, she now walks with confidence. If the sport requires it, she even runs. Now age seven, Agape still likes wearing her orthoses and has an understanding of why they are important.
Boundless Approach
Apage and her parents with Agape's Orthotist Gordon Ruder
Agape's flat feet presentation would be described as a 'pes planus' presentation. In her case this flat foot position is due to low muscle tone (known as 'hypotonia'). Hypotonia is frequently observed in individuals with Down Syndrome.
Our decision of when to treat for paediatric flat foot is based on an assessment of the foot presentation and the child's symptoms. Paediatric patients may experience symptoms of: pain in feet, knees or back, difficulty keeping up with peers, balance concerns and the desire to be carried.
Children naturally have a fat pad present in the arch of the foot which may exaggerate the appearance of a flat foot. This fat pad helps to protects the boney structures of the foot in early standing. Flat feet caused by abnormal muscles and ligaments can results in a more severe deformity and worsening symptoms. The decision to treat for paediatric flat foot is not often black & white. Our clinicians use evidence based practice to inform our decision of when to treat. This includes clinical reasoning, best evidence and the perspectives of the patient and family.
Successful orthotic management can lead to
Pain reduction
Increased endurance
Decreased fatigue
Change in activity levels
Improvements to balance
Deformity avoidance
References
Rome, K., Ashford, R. L., & Evans, A. (2010). Non-surgical interventions for paediatric pes planus. Cochrane Database Syst Rev, 7.
Harris, E. J., Vanore, J. V., Thomas, J. L., Kravitz, S. R., Mendelson, S. A., Mendicino, R. W., ... & Gassen, S. C. (2004). Diagnosis and treatment of pediatric flatfoot. The Journal of foot and ankle surgery, 43(6), 341-373.