31 May Does Diagnosis = Prognosis? Early Intervention is the Game Changer!
As a Paediatric Physiotherapist, I see many babies and children presenting with various conditions and problems with delayed gross motor skills development. Sometimes, the children have no diagnosis for the cause of their delay and sometimes they do. Not having a diagnosis can often be a source of distress and frustration for parents because it is difficult to understand why your child is not “normal like other children”. Some parents ask me “why do their child need to have physiotherapy to help them learn to roll, to sit, to crawl and to walk when other babies seem to just do their own thing without help?” The simple answer is every child is different, and every family situation is different. The why is probably not as crucial as the how, the question to ask is not why does my child need help to move, but rather how can we help your child learn to move?
As a Paediatric Physiotherapist, my frustration is not with the children who do not have a diagnosis but rather the children who have a diagnosis because there seems to be an underlying assumption that diagnosis equals prognosis. For some reason, if a child has a diagnosis, and if that diagnosis is for moderate to severe developmental delay, and the prognosis based on research indicates the expected outcome is not to be walking or walking is not achieved until 3-4 years old, then therapy is tailored to suit that predicted prognosis.
Parents have brought their child with a known diagnosis for their developmental delay to see me for a second opinion, as they are not happy with the level of progress their child demonstrates after several months or years of therapy with other organizations. Parents will often tell me that their child has been receiving early intervention, but the therapy visits vary between every 2-6 weeks, and what happens during the therapy can vary from case management with form filling, to provision of positioning equipment to group therapy. For example, if a child has a diagnosis of Down Syndrome, then the expected prognosis is that the child will be delayed in their gross motor skills development compared to their peers, as such the prevailing practice to simply support that slow development and parents are told to expect that of their child.
However, as a Paediatric Physiotherapist, my experience with treating children is that Diagnosis ≠ Prognosis, but rather Diagnosis + Intensive Early Intervention = Outcomes surpassing the predicted Prognosis. I have treated children with Down Syndrome with intensive early intervention and helped them to achieve their gross motor skill milestones equal to typically developing children. I have in the past, seen a child given a diagnosis of severe brain damage indicated on brain MRI at birth, and her parents were told that their child’s predicted prognosis is not to walk and to be wheelchair bound. Yet the same child presented to me at 13 months, achieved independent walking in 5 months of intensive physiotherapy with me. I can list many other examples of children with various conditions ranging from Joubert’s Syndrome, Angelman’s Syndrome, Cerebral Palsy to Undiagnosed Developmental Delay, who all have achieved outcomes that surpassed their predicted prognosis. This however, did not come without the hard work and persistence of parents and families. There is no quick fix or magic ward to wave to obtain such results.
3 Key Features of Effective Early Intervention
If your child has special needs and is receiving early intervention, then here are 3 key features of what I think effective early intervention should mean for your child and you.
1. Initial Assessment – Objective Measurement of Gross Motor Skills
At the first visit, there should be an objective measurement of your child’s gross motor skills so that everyone is clear on what your child is currently doing, and what they need to be achieving. This provides a baseline measure of your child’s gross motor skills, and allows for monitoring of the skills being achieved over time.
2. Intensive Hands-On Intervention
During therapy visits, there should be hands-on intervention individually tailored for your child’s needs. Group therapy is nice and has its benefits for social interaction between children and parents, however, the aim of early intervention is to achieve gross motors skills, and each child is individual and should get individual strategies to learn the skills that they need. Families need to go home and practice the strategies daily with their child if they want to see change.
As a Paediatric Physiotherapist, my frustration is not with the children who do not have a diagnosis but rather the children who have a diagnosis because there seems to be an underlying assumption that diagnosis equals prognosis. For some reason, if a child has a diagnosis, and if that diagnosis is for moderate to severe developmental delay, and the prognosis based on research indicates the expected outcome is not to be walking or walking is not achieved until 3-4 years old, then therapy is tailored to suit that predicted prognosis.
Parents have brought their child with a known diagnosis for their developmental delay to see me for a second opinion, as they are not happy with the level of progress their child demonstrates after several months or years of therapy with other organizations. Parents will often tell me that their child has been receiving early intervention, but the therapy visits vary between every 2-6 weeks, and what happens during the therapy can vary from case management with form filling, to provision of positioning equipment to group therapy. For example, if a child has a diagnosis of Down Syndrome, then the expected prognosis is that the child will be delayed in their gross motor skills development compared to their peers, as such the prevailing practice to simply support that slow development and parents are told to expect that of their child.
However, as a Paediatric Physiotherapist, my experience with treating children is that Diagnosis ≠ Prognosis, but rather Diagnosis + Intensive Early Intervention = Outcomes surpassing the predicted Prognosis. I have treated children with Down Syndrome with intensive early intervention and helped them to achieve their gross motor skill milestones equal to typically developing children. I have in the past, seen a child given a diagnosis of severe brain damage indicated on brain MRI at birth, and her parents were told that their child’s predicted prognosis is not to walk and to be wheelchair bound. Yet the same child presented to me at 13 months, achieved independent walking in 5 months of intensive physiotherapy with me. I can list many other examples of children with various conditions ranging from Joubert’s Syndrome, Angelman’s Syndrome, Cerebral Palsy to Undiagnosed Developmental Delay, who all have achieved outcomes that surpassed their predicted prognosis. This however, did not come without the hard work and persistence of parents and families. There is no quick fix or magic ward to wave to obtain such results.
3 Key Features of Effective Early Intervention
If your child has special needs and is receiving early intervention, then here are 3 key features of what I think effective early intervention should mean for your child and you.
1. Initial Assessment – Objective Measurement of Gross Motor Skills
At the first visit, there should be an objective measurement of your child’s gross motor skills so that everyone is clear on what your child is currently doing, and what they need to be achieving. This provides a baseline measure of your child’s gross motor skills, and allows for monitoring of the skills being achieved over time.
2. Intensive Hands-On Intervention
During therapy visits, there should be hands-on intervention individually tailored for your child’s needs. Group therapy is nice and has its benefits for social interaction between children and parents, however, the aim of early intervention is to achieve gross motors skills, and each child is individual and should get individual strategies to learn the skills that they need. Families need to go home and practice the strategies daily with their child if they want to see change.
3. Change should happen every 2 weeks.
My experience and expectation for all children that I see is that change will happen every 2 weeks. The amount of change that happens will vary for each child and depends on the individual diagnosis, but change should happen if families are carrying out the specific home exercise program they are given to follow. If change isn’t happening, there is a reason for it. Often that reason is not enough is being done at home, and if nothing changes with the routine/intervention, nothing changes.
Early Intervention is the Game Changer and Effective Early Intervention will alter the outcomes of the predicted Prognosis. If you are not seeing the change that should happen after months of early intervention, ask yourself, are you doing what you need to do? If you are and still nothing is happening, get a second opinion, contact our Paediatric Physiotherapist on 9557 8521 for an appointment today.