By Valeriya Demydenko, Maria Gladkikh & Alexandra Krassikova
With the birth of my first son, who will be called “Soybean” throughout this article, I was suddenly assigned the role of an advocate. I had to fight to get his diagnosis, fight to secure his therapy placement and funding, and fight for his rehabilitative and accessible equipment. In reality, this fight never ends for families with children who have disabilities.
In my heart, I always knew that Soybean was different. However, all my concerns regarding his delayed developmental milestones and strange movement episodes were dismissed by his pediatrician. Our route to an official diagnosis took 10 months and involved many office visits: a pediatrician, two community neurologists, an online consultation with an international neurologist, a chiropractor, energy practice healers, an Anat Baniel Method therapist, and a physiotherapist. Finally, when Soybean’s development seemed to pause and his strange movement episodes became more frequent and intense, we showed up at the Emergency Department of The Hospital for Sick Children on January 1st, 2019. After 8 hours of waiting, we had our first electroencephalogram (EEG) to examine Soybean’s brain activity, and at 8 months old Soybean received his first diagnosis of infantile spasms. A multitude of tests followed while we anxiously awaited the results.
Two months later, Soybean’s ultimate diagnosis came in the form of an MRI. I vividly remember coming to our routine neurology appointment and being “surprised” by the sudden visit of the entire neurology team. They delivered the diagnosis of lissencephaly while showing Soybean’s brain scans. Everything happened so quickly that we could not process the news or formulate proper questions. The response to our, “what does this mean?” was redirected to the genetics team, who we were scheduled to see six months later. As a piece of advice, we were told not to Google – but Google was our only source of answers.
By now you are probably wondering: what are infantile spasms and lissencephaly? Infantile spasms are uncommon seizures primarily affecting infants between 3 months to 4 years of age (1). These terms are often used interchangeably with West Syndrome, which is an epileptic disorder involving infantile spasms and intellectual disability. Infantile Spasms are usually associated with an underlying neurological condition and have a poor prognosis, although earlier diagnosis may lead to more favorable outcomes (1). In Soybeans’s case, the underlying neurological condition was lissencephaly, which is a rare brain malformation occurring during embryonic development, the incidence of which is not known (2). Lissencephaly is characterized by the absence or incomplete development of cerebral folds and grooves, resulting in a “smooth brain” appearance. Symptoms vary from one child to the next, depending on the degree of brain involvement and type of lissencephaly (2). Unfortunately, the prognosis is poor with many children facing significant developmental delay, intellectual disability, epilepsy, feeding difficulties, and even death, typically from respiratory distress. Treatment for lissencephaly includes symptom management and supportive therapy (2).
Research has shown that learning about a child’s disability diagnosis raises similar emotions as finding out about the death of a loved one (3). Upon learning about the diagnosis of our son, my husband scoured the internet day and night looking for answers, while I felt paralyzed. I felt that I had no strength to care for my son, who might die in three years. Feelings of grief, guilt, and hopelessness took over our life. In addition, I was left questioning if anything could be different if our path to receiving the diagnosis did not take 10 long months. In my eyes, this was a very long time without a diagnosis, treatment, or appropriate intervention for the developing brain of a child. Thus, as a mother, I always wonder: would Soybean’s rehabilitation outcomes be different if a treatment plan was initiated earlier?
A recent report published by the European Brain Council suggests that early diagnosis and intervention for brain disorders, including epilepsy, leads to measurable health gains and improvements in quality of life (4). Damage to the brain alters the function of neuronal synapses and neural networks and can impact learning processes. Early rehabilitation aims to address the deficits through the encouragement of neuroplasticity, the brain’s ability to create new neuronal networks and “rewire” its circuitry to learn and relearn tasks and enable its functioning at optimal capacity (5). Rehabilitation for children with physical and intellectual disabilities can encourage participation in daily activities, such as mobility, exploration, and play, which are vital to a developing child; advance development; and ultimately improve the child’s autonomy and quality of life. It is not surprising that earlier access to rehabilitation is important for the growth and development in this population, and intensive therapies have been shown to improve children’s skills contributing to an improvement in developmental abilities (6).
The world of intensive rehabilitation therapies for children with disabilities is diverse, with a range of approaches such as Cuevas Medek Exercises (CME), Trexo Plus Robotics, Tobii, aqua therapy, Therabounce, or equine therapy. Furthermore, recent advances in technology and robotics are rapidly progressing the rehabilitative process, as they can alter the delivery of therapy to children and change the way children with severe disabilities interact with their environment. However, at the moment, Ontario only covers the “standard” rehabilitative therapies, which are physiotherapy (PT), occupational therapy (OT), speech-language therapy (SLT), and passive orthoses. The monetary coverage for these services is determined on a case-by-case basis. We quickly discovered that the government-provided rehabilitative services of 1 hour of PT per month, 1 hour of OT per month, and 1 hour of SLP every three months. This was insufficient for Soybean’s development as he required more regular therapy sessions than what was funded. Like all parents, we wanted to provide the best for our child and help him reach his full potential. This meant exploring the private sector of rehabilitative services.
Currently, a vital part of our weekly therapy plan is 2 hours of CME PT, 2 hours of OT, and 1 hour of SLP. CME is early intervention physiotherapy that focuses on developing automatic motor responses using exercises against gravity in children with motor disabilities and hypotonia. Although this program has little scientific evidence, it is used almost worldwide and is attracting interest from patients and physicians (7). In addition to standard therapy and CME, Soybean is benefitting from the Trexo Plus Robotic System. Trexo is a novel robotic gait assistive technology (approved by Health Canada) that can help children with disabilities mobilize independently. It is made up of an exoskeleton – which essentially means two robotic legs – connected to a child’s legs (8). We can adjust the speed and level of support through an iPad while Soybean safely and independently explores his environment.
The gains we have seen are incredible: head control, improved trunk control, improved motor skills, improved vision, and rolling as a means of getting around. Soybean has achieved this after two years of participating in private therapy and partaking in five therapy intensives. Therapy intensives are intensive bursts of therapy, done every day or twice a day for the duration of a week to three weeks. These are achievements against Soybean’s diagnosis that predict the developmental ability of a 3-month-old.
Unfortunately, despite the clear benefits of rehabilitation, their cost and availability continue to be the primary deterrents. The specialized rehabilitative services that Soybean enjoys (summarized in Table 1) are found mostly in large urban centres such as Toronto, but unfortunately are not yet available in smaller communities. From anecdotal experience, families drive from Kingston and London to access these specialized therapies that we are fortunate to have nearby. Furthermore, many of Soybean’s private therapies have waitlists and limited time slots, which may make it logistically difficult for working parents. This significantly disadvantages children with disabilities who may only be exposed to services covered by the government. It also puts enormous financial strain on parents who access private therapy to compensate for this gap.
As the field of rehabilitation progresses, the policies on accessibility of rehabilitative services must be re-evaluated. Our story demonstrates that children with disabilities can greatly benefit from programs that are not currently government funded, such as Therabounce or CME. Despite the financial burden, enrolling Soybean in diverse private therapies has shown significant improvement in his abilities. This would not have been the case if Soybean exclusively attended the therapies that were government funded. We propose a redistribution of funding, so that families could decide what type of rehabilitative service would best benefit their child.
Everything happened so quickly that we could not process the news or formulate proper questions.
|Therapy||Description of Therapy||Cost||Frequency of Use|
|Private PT & OT at SMILE Therapy for Kids Center||PT: The goal is to improve automatic postural responses with the use of assistive devices to help progress towards developmental milestones (9).OT: Improve hand-eye coordination and vestibular function.||$130 / hour||Twice per week|
|Private SLT at SMILE Therapy for Kids Center||Soybean works on feeding skills, Augmentative and Alternative Communication, and verbalization through play.||$95 / 45 min||Once per week|
|Cuevas Medek Exercises PT||PT that focuses on developing automatic motor responses using exercises against gravity.||$150 / hour||Once per week|
|Prooday Play Group||Group-based activities with other children, including music circle, sensory activities, arts and crafts to improve fine motor & social skills.||$60 / hour||Three times per week|
|TheraBounce and Rebound Therapy||Using a trampoline or rebounder, Soybean works on balance, muscle tone, and sensory integration.||$85 / hour||Once per week|
|Trexo Robotics||Robotic gait assistive device that helps Soybean practice walking patterns.||$1000 / month||Daily|
|$4800/ monthly total|
Featured illustration by Chris Ly & Emily Tjan for rehabINK.
To refer to this article, it can be cited as:
Demydenko V, Gladkikh M, Krassikova A. Rehabilitation is essential, but is it accessible? rehabINK. 2022:Issue12. Available from: https://rehabinkmag.com
- Hancock EC, Osborne JP, Edwards SW. Treatment of infantile spasms. Cochrane Database of Systematic Reviews. 2013(6).
- Kattuoa Ml, M Das J. Lissencephaly. In: StatPearls. StatPearls Publishing, Treasure Island (FL); 2020. PMID: 32809601.
- National Academies of Sciences, Engineering, and Medicine; Division of Behavioral and Social Sciences and Education; Board on Children, Youth, and Families; Committee on Supporting the Parents of Young Children; Breiner H, Ford M, Gadsden VL, editors. Washington (DC): National Academies Press (US); 2016 Nov 21.
- European Brain Council. The value of treatment policy white paper: towards optimizing research and care for brain disorders. http://www.braincouncil.eu/wp-content/uploads/2017/06/ EBC_white_policy_paper_DEF26072017_Low.pdf Accessed November 9, 2021
- Novak I, Morgan C. High-risk follow-up: early intervention and rehabilitation. Handbook of clinical neurology. 2019 Jan 1;162:483-510.
- DeLuca SC, Wallace DA, Trucks MR, Mukherjee K. A clinical series using intensive neurorehabilitation to promote functional motor and cognitive skills in three girls with CASK mutation. BMC research notes. 2017 Dec;10(1):1-6.
- Ramires de Oliveira G, Fabris Vidal M. Developmental outcomes in a child with corpus callosum abnormalities and congenital heart disease after Cuevas Medek Exercises: A case report. Clinical Case Reports. 2021 Aug;9(8):e04637.
- McCormick A, Alazem H, Hunt C, Zaidi S, Dixon C. Robotic Walkers for Children and Youth with Cerebral Palsy: A Review of Past Successes and Ongoing Advancement.