Friday, August 21, 2015

Anel van der Merwe

Early Intervention in Cerebral Palsy from a Paediatric Physiotherapist’ perspective


Let me perhaps start by explaining what Cerebral Palsy and Early Intervention means.


Cerebral Palsy is a very broad term given to disorders of movement and posture. The damage to the brain is in the different parts of the brain that are responsible for controlling movement.   The damage is permanent but not progressive, but because we work with children who are growing, we see symptoms which appear progressive i.e. children might get tightness in their muscles or develop deformities such as curvatures in their spines which may require surgery. Other parts of the brain responsible for functions such as communication, hearing, vision and the ability to learn may also be affected.   The lesions in the brain could be sustained before, during or after birth before the second year of life.


Early intervention is a term that is often used when it comes to treating children with Cerebral Palsy. It is to be proactive with assessments and treatment for babies where there is an indication that they could have possibly sustained a brain lesion and would likely be diagnosed with Cerebral Palsy later on in life.   A range of professionals are involved including a Paediatrician, Health Visitor and Physiotherapist to name but a few.   The purpose of early intervention is to reduce the likelihood of poor long-term outcomes for children and their families.   Early intervention does not mean preventing or curing.   It is important that early intervention starts at the earliest possible point when the baby is medically stable and preferably before problems appear.   My philosophy is that it is better for a baby to receive treatment and optimise their development, even if they are not diagnosed with Cerebral Palsy at a later stage than to wait and see’ and waste valuable time and have their development compromised.


It is also important to understand how the brain develops early on in life in order to understand the theory behind early intervention.   I’ll try to explain this in the simplest way possible.   A baby is born at 40 weeks gestation with roughly 100 billion neurones already developed in theirbrain.   There are enough neurones to last a lifetime.   You can imagine these as a multitude of small trees with many branches and leaves.   Initially the baby’s movement is made up by innate patterns/responses andmovement that is already acquired in the womb.   With this very basic repertoire of movement the baby will start experimenting, sometimes accidently, and as these new movements are repeated, the leaves of different ‘trees’ will start making connections and as these movements become more refined and skilled a process known as pruning will take place where some of the branches and trees will be reduced to make the brain environment less cluttered.   


The more the connections are used the more they becomestronger and well organised pathways and the movement are no more experimental.   The messages that are sent across these pathways can therefore be sent quicker and more efficiently and this results in skilled movements becoming smoother and more automatic, i.e. it is not a carefully thought through process any longer but rather just happens almost without thinking.   This process counts for the repetition of normal and poor/abnormal movement that could therefore also lead to poor habitualmovement patterns which could lead to further difficulties.

If movement is not repeated the brain interprets it as irrelevant and discards the connections, this is better known as the ‘use it or lose it’ phenomenon.    You could say the brain is building up a memory bank with lots of strong connections that it can use subconsciously.  In time with a bigger repertoire of movement connections, the brain can assess a situation and select in an instant which movement patterns will be most appropriate and this forms part of an individual’s problem solving abilities.   


The process where connections are made is known as myelination and is optimised in the first year of life.  After infancy, myelinisation continues until the age of about 40 and, although it is never too late to make changes, it is easiest to make changes in the first year of life particularly if there are difficulties with a baby’s development.    If you’d like a very good more in depth explanation of the neurophysiology of the developing brain and you are up for a heavy but interesting read then I can highly recommend the following article: Early Diagnosis and Early Intervention in Cerebral Palsy, 2014 by Mijna Hadders-Algra(   This article does however conclude that there is very little research evidence into whether early intervention is effective and that more research is desperately needed to guide best therapy practice.


Having worked with children with Cerebral Palsy for more than 16 years it is my experience that the majority of children with Cerebral Palsy are not referred for therapy soon enough and that there is often an attitude of ‘your baby is only delayed and they will be ok by the time they are 2 years old’.   This is despite parents continuously raising concerns.


In my opinion if there are any high risk indicators, such as a baby being born early (32 weeks gestation and earlier), poor Apgar scores at birth following a traumatic birth, scans indicating any bleeding or cysts, a baby should be regularly assessed and treated proactively.   There are neuroimaging assessments (e.g. MRI and CT scans)neurophysiological assessments and several neuromotor examinations that have diagnostic properties that could be used alongside clinical observation by an experienced clinician.   One diagnostic neuromotorexamination is the Prechtl’s method on the qualitative assessment of general movements.   This assessment method is used for the prenatal and postnatal evaluation of the integrity of the nervous system and is now proved to be the best predictor for cerebral palsy at a very early age i.e. before or the first few weeks post birth.   Hand in hand with this assessment, Bobath trained therapists are equipped with excellent observational skills and detailed knowledge of typical child developmental movement patterns.   A therapist with this experience is therefore able to observe subtle abnormal movement patterns and muscle tone. diagnosis of cerebral palsy is not necessary for a Physiotherapist to start treating a baby/child especially as this may not happen until the child 18 months old, it is however important that if a child has Cerebral Palsy the diagnosis is made as soon as possible to ensure a baby/child is supported holistically.   Traditionally a child is formally diagnosed at 18 months because this is the time when developmentally a typically developing child has reached the majority of their gross motor development and a concrete comparison can be drawn.   With all the modern diagnostic tools and clinical expertise combined this can be significantly brought forward.


So if there is not concrete evidence whether treating a baby early has a positive long-term outcome then why am I advocating this approach?   During my Physiotherapy training in South Africa we had a fourth year project in a very rural part of South Africa.   It is culturally the belief of the residents that if a child is disabled forefather spirits possesses them and they are therefore ‘locked’ away in dark rooms.   With the help of a local Physiotherapist, a local school and a few mothers that volunteered we managed to persuade several families to entrust us with their children and care for them during the day at the local school.   We trained up the mothers in handling and communication skills and how to feed the children in a safer way.   Why I’m sharing this story is that most of these children, who never received any therapeutic intervention, suffered with severe contractures and deformities and were significantly delayed in several areas but particularly in communication.   Some of these children could not be placed in a seated position due to the contractures and had to be positioned in a comfortable lying positionThis experience is etched in my memory and as I’m now working in a first world country, we don’t see the effect of no therapeutic intervention. I get passionately upset when there is suggestions that therapy is not effective based on the fact there is poor or no research evidence.   Later in my career as I’ve gained more experience I’ve learned that due to abnormal muscle tone, children learn compensatory strategies in order to move up against gravity when they have abnormally high or low (or combination of the two) muscle tone.  In the select few children whom I have been privileged to have treated from an early age, i.e. before the age of one, I have learned that by influencing the muscle tone through handling techniques you are actually able not only to change movement patterns but to reduce/minimise the use of learnt compensatory strategies.   


I’ve also experienced that when you start treating children later, you spend a lot of time helping the child to ‘unlearn’ habitual compensatory strategies or bad habits. So apart from the actual potential changes we suggest happen in the brain and that we can influence with early intervention, there is also a large element of not allowing poor strategies to develop in the first place.   I have to state that this does however require frequent hands-on Physiotherapy input by an experienced Paediatric Physiotherapist in partnership with the child’s parents following through with handling techniques throughout the course of everyday.   


I recall the countless times I have hear parents say, ‘we were told that our child will never walk, talk or understand anything and now look at him/her …’.   I encourage every parent who has a baby and have ANY concern in there development to seek therapeutic intervention even if you are told countless times that everything will sort itself out.   Always trust your parental gut instinct.   And for all the parents who have older children that have been diagnosed with cerebral palsy and have not had the chance at early intervention don’t be discouraged, it is NEVER too late to start making a difference!

Anel van der Merwe

Member of the Chartered Society of Physiotherapy

Clinical Specialist Paediatric Physiotherapist

Please visit my website if you wish to learn more about what we do and/or if you’d like to make contact.

Saturday, August 15, 2015

Helping Hands!!

Sierra and I have been getting our hands dirty this weekend in an attempt to make hand printed t-shirts that we can give out as gifts for Sierra's Angels giving us a 'helping hand' towards the next focus... getting Sierra's hands functional to enable her to drive a motorised wheelchair.
We have a physiotherapy intensive booked for the last two weeks of September. We will be working with Anel van der Merwe who has worked with Sierra since she was 5-6 months of age and is by far the best physiotherapist we've found for Sierra's complex needs. In addition I have now confirmed Tereza Honcu to work with Sierra in advance of, and Anna Dobisova to work side by side with Anel during the week of September 28th - Oct 2nd to loosen her upper body up and provide additional support. Sierra is now at an age and body weight that I cannot do an OS trip alone. Previously I have flown a carer from Australia to help. Tereza is an excellent physiotherapist from Prague who has also supported Sierra from the first few months of her life and Anna is one of Tereza's peers. This time I am flying the two girls for one week each to support us. The care, physiotherapy and return flights are less than it costs to fly someone from here! I am so happy with the way all the pieces of the jigsaw are coming together, mostly because I know these therapists really connect with Sierra, and I feel confident it will make a significant impact to her function.

The next thing to secure is accommodation...

Any 'helping hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra x

Saturday, August 8, 2015

Helping Hands!!

It's been a week since I announced we are kicking off a new fundraiser with a focus on having Sierra's hands become functional. If you spend just 10 seconds and imagine what difference using one's hands provides for any of us. For Sierra it could mean being able to direct a motorised wheel chair around her home.

We were able to get Sierra's hands to open from tight fists when we did Stem Cell therapy in her early years. We have enabled her hands to stay open (against the pull of the spasticity to revert back to fists) with Botox, hand splints and physiotherapy. It's now time to put those cute little hands to work!

The first challenge will be to loosen Sierra's upper body such that she can get the most from another physiotherapy intensive focussed on enabling her hands. The intensive will then need to be followed up by Shane and my efforts by applying a 6-12 month home program.

We have booked in with Anel van der Merwe for the week of September 28th - Oct 2nd for this physiotherapy intensive. The price will be £800 for 2 x sessions each day and the home program to be written up. Anel has been Sierra's physio since she was 5 months old and is by far the best Bobath therapist we have ever worked with. In addition she has partnered with Shane and me year on year in advising us how to take Sierra far beyond where others thought she could achieve.

I have also found the right person to work with Sierra ahead of the physio intensive to loosen up her upper body in preparation.... more to come!

Any 'helping hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra x

Saturday, August 1, 2015

Helping Hands!!

It's time to start again......We left off in December 2014 with a bright future ahead. Unexpectedly we've had a tumultuous time integrating Sierra into school this year. Now with her participation in school finally settled we have had the space to consider what's next in supporting this little poppet in going beyond her limits..... After reflection on where Sierra's needs currently are and what would be the best thing to enable Sierra to be the most functional she can be (with a view to her living independently in the future), we have chosen her hands as the next focus. Hence my title "Helping Hands".

This September we have booked Sierra in with Anel van der Merwe (the most competent therapist we have found, and Sierra's physio of 8 years) to work specifically on obtaining more functionality with her hands.

Any 'Helping Hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra x