Saturday, 20 June 2015

Constraint Induced Therapy and the Good Limb

I had to put my thoughts down in response to a post from Karen Pape, MD. In her blog "Revolutionize Your Approach to Therapy this Summer" she advocates for "splinting" the more affected limb of a child with CP to encourage them to use their good side better. My first reaction to the idea splinting the more affected side to allow increase work of the stronger side was...

Many of the kids I work with will naturally use their stronger side to the detriment of the weaker side and their overall postural alignment. In fact – most times, use of the stronger side “switches off” the weaker side, or worse – actually increases tone and harmful alignment.
I’ll describe 2 kids to illustrate:
1. Jamie is a 13 year old child with spastic diplegia (GMFCS IV). 
Using Dr Pape's descriptions, upper limbs would be  70% of normal function, lower limb would be 20% – 30%. 
When Jamie pulls to stand using his hands, he does so with his legs “locked” in a spastic pattern of hip adduction, knee and hip flexion and ankle planterflexion. Typical diplegic stand in other words. He can move from sitting to standing without his hands if well supported at the pelvis. Although it is harder work for him if you take the hands away – standing without pulling with his hands ‘switches on” his glutes and quads resulting in  much improved alignment of the legs and Jamie is able to stand up with neutral hips and knees. So letting him use his stronger limbs (arms and hands) results in more spasticity in his lower limbs and worse function.
2. Marc is also a 3 year old child with diplegia (GMFCS IV). He has a stronger right hand (50% of normal function) and will use that hand for play, fixing the left hand (40% of function) in a flexor pattern as a postural stability strategy, which pulls his whole trunk to the left. 
Constraining the right hand with a soft splint encourages the left hand to come to the party. When Marc uses his left hand, the flexor tone in his left trunk relaxes, resulting in better body alignment. So Marc naturally "splints" his worse hand without anyone having to do it for him when he is busy with his right hand – which he does all the time to the detriment of developing skills in his more affected, but functional left hand.
So, with this in mind, just as I was thinking I finally disagreed with Dr Pape, right at the bottom of this blog I read a sentence or two about constraint and alignment – and the penny dropped for me. 
The penny being ALIGNMENT!

What Dr Pape is proposing is not revolutionary, but quite old school NDT. By splinting the more affected limb in a position of good alignment, what you are actually doing is using a tone influencing pattern (TIP) or really old school “reflex inhibiting posture” (RIP). NDT therapists use this all the time to decrease effort and help kids move out of a spastic pattern into a functional movement skill with good alignment. 
I love when "revolutionary" is really just a rehash of NDT!
Maybe what is more revolutionary – is the idea of practicing this during the summer holidays :) .
So overall – good therapy advice as usual and a reminder that whenever we think about constraint in young kids it is so important to remember that as well as encouraging use of the more affected limbs, kids need time to develop good skills in the less affected limbs, which is enhanced by keeping the worse limb in a good TIP.
So thanks once more to Dr Pape for taking the time to write down your excellent advice and provide a place to encourage more specific conversations about what therapists do and why we should do it.

Thursday, 12 February 2015

Would you vaccinate your baby? Can you spot the pseudoscience?

I read an article today that was presented as  "excellent and provocative" but I found it irritatingly misleading at best. It starts off with some facts (word definitions) then jumps right into conspiracy theories about how the pharmaceutical companies are in collusion with medical journals and none of the research on medicine they sell can therefore be taken at face value. Because of this,  unless you personally as a parent have investigated the ethical and professional motives of any researcher or scientific journal that is not anti-vaccines, you are negligent if you take their advice … Seriously?
It then goes on to very conveniently present the author’s beliefs as “facts” (with no references)
This is a debate about immunity, is it not? If it is, then how can you not mandate vaginal birth and breast feeding until the age of two (minimum), the two primary components of the development of a healthy immune system —an immune system that can reduce the spread and severity of disease along with injury and death rates?
How can you support the current industrialized (and subsidized) food supply full of grains and sugars that are ravaging child and adult immune systems and leading to the preventable deaths of hundreds of thousands of more people than the diseases you wish to vaccinate against?”
Not that I don't agree that there is some validity in the message, but really, who has proved these “components of a healthy immune system” and dangers of “grains and sugars”? I wonder if the author applied his own recommendations of being skeptical of the journals and researchers presenting these theories but I imagine they fit so tightly with his own beliefs he probably just accepts them as factual. The hypocrisy here is too annoying.
I am not preaching for or against vaccines, but I am against pseudoscientific articles that pretend to be logical. I will say this on the subject though – since we can’t trust the research how are we to decide what is in the best interest of our babies? The current generation of parents predominantly grew up in a time when doctors where not questioned and if the doctor said the vaccine was what your baby needed, then that’s what a good parent did. I think the right to question and the access to knowledge is fantastic, but I wonder then at the correlation between the fact that as more and more parents are deciding NOT to vaccinate, more and more children are being diagnosed with Autism – just a thought...

Sunday, 13 October 2013

The ABC's of NDT

NDT has gotten a bit of a bad rap recently. Neurodevelopmental therapy (Bobath) has been a mainstream approach to treating children with cerebral palsy since Karel and Berta Bobath introduced their theories sometime in the 1970’s. What was it about this approach that catapulted it  into an accepted approach to treating cerebral palsy all over the world?  And why, despite the poor evidence, do intelligent, scientifically minded, educated and experienced therapists still value it? Or do they?
I wonder if other paediatric NDT trained therapist think their NDT training was a waste of time? If we want to be effective and offer the best to our little clients and their families, we do have to sit up and ask the hard questions. 
Is it time for us NDT therapists to leave Bobath behind?
Well I for one don’t think so. It’s the backbone of everything I do. The way I think, the way I analyse, understand and problem solve. To me knowing NDT is like knowing my ABC’s.
It's like this...Imagine we did a study that asked what approach was better at teaching kids literacy? In this study, we would measure the outcomes by the amount of words the kids could read at the end of the study.
Method 1: Teach the alphabet, blends and language rules,

Method 2: Teach  kids to recognize flash cards of the words being tested.

 The kids that were taught the flashcards would most likely do better in the testing. This would “prove” that learning the alphabet, blends and rules is not as effective as using flashcards in learning literacy right? 

It’s true you know, you can teach kids to recognize words much quicker with flashcards, but flashcards are just a tool to learning. They offer a fairly one dimensional way to learn to read. If you are going to read and write effectively, you’d better learn your ABC’s … and if you are going to practice paediatric therapy, you’d be better off having had some training in NDT. 
iPads are another great tool for teaching literacy. There are a growing number of schools using iPads and some people wonder if it will replace ink and paper? I imagine there is probably a place for both, but no matter which they use,  an understanding of the ABC's is still essential. Similarly, as a therapist we could use constraint induced therapy or bimanual training for a client with a hemiplegia. We might even decide there is a place for both with the same client. They are both effective tools that we may choose for different reasons, but I believe having an understanding of NDT principles when applying them would be essential in achieving a richer and more holistic outcome.

In the systematic review of interventions for children with cerebral palsy (Novak et al. Asystematic review of interventions for children with cerebral palsy: state ofthe evidence. DevMedChildNeurol.2013), the authors noted that most NDT therapists do use an “eclectic approach”, incorporating motor learning stategies, botox, splinting and other “green-light” methods into their treatment. They thought this made it difficult to judge the effectiveness of  NDT treatment alone. Well I have to ask – what exactly do they think NDT is? 
It is not a bunch of reflex inhibiting patterns, it is not a recipe of exercises on a ball – these were concepts that were easy to learn and perhaps became what those without a good understanding of the Bobath concept accepted as being an “NDT” treatment.

NDT is not a tool, it's a way of  understanding the importance of alignment, weight-shifts, pelvis, trunk, quality, effort, tone, patterns of movement and neurodevelopment - and then using that understanding - to analyze needs, practice skills, find key points of control and develop function. It is a working framework. 
Therapists with an NDT background have a rich and complex understanding of how abnormal neurology impacts movement. They learn to see the whole child. How to link the pelvis to the pencil grip and the obliques to the oropharynx, so to speak. No mater what other approach is used, having an NDT scaffold to hang it on will give the therapist an in-depth understanding of what is working and why.  To the authors of the systematic review, it’s the reason that those of us clinicians who call ourselves NDT therapists, love it. It’s also the reason that we blend it with other evidenced based tools. 
Yes, some older concepts like RIP's are no longer used. NDT is a living framework after all and it  changes as new science becomes available. Knowing your ABC’s without actually using it to write and read sentences, to make up paragraphs, and chapters, and books – is not particularly useful. As NDT therapists, we do need to add function and participation to quality; and we do need to have a toolbox filled with a variety of different evidenced based treatments, but we don’t need to throw Bobath out with the bath water.

I believe it’s time to understand that NDT is not a treatment tool. It is a concept, an important baseline of understanding cerebral palsy and other developmental delays that enables the NDT trained therapist to take newer treatment approaches and apply them as a specialist, rather than as technicians.
If you are an NDT therapist, I’d love to know what you think. 
If you haven’t done your basic NDT training or a recent update – I’d love to hear from you too, but I may be thinking that you might have missed the point

Saturday, 28 September 2013

Main stream or special(ized) schooling

 I recently read a post about main stream versus special needs schooling for children (link). It took me back a few years to when I was a fairly newly physio. Freshly qualified I  worked in a school for children with cerebral palsy and learning difficulties. In those days (some 20 + years ago) children were separated into “appropriate” schools by their physical (dis)abilities and their scores on an IQ tests. My school accepted children from all over the country, provided they had an IQ above 60 and learning or physical difficulties, which predominantly meant cerebral palsy. Some kids travelled over an hour each way on the bus to get to school and others (as young as 6) boarded at the school if they lived too far away. Inclusion was just starting to make a dent in our conciousness,  but I was very pro special schools at the time 
Fast forward many (many) years and now I am working in the community seeing children with varying degrees of physical and intellectual disability at mainstream schools and thinking how fabulous it is. I’ve watched kids in special school go mainstream and kids in mainstream go to special schools - both for the better.  I’ve even been around long enough now to watch some of these kids grow up and start University (makes me soooooo old!!) and so I wondered, if  it were my child, would I go mainstream or special ed?

Here’s what I thought…

Main Stream Pro’s :
1.  Community, community, community
Kids get to be a part of their community. They have the opportunity to build friendships with kids in their own neighbourhood. By their very nature, special needs schools have a wide catchment area and kids come from far, often making it difficult for parents to get together with their kids classmates for parties or play dates or just hooking up at the local park. 

2.  If everybody’s special then nobody’s special (kudos to “The Incredibles”)
Kids are far more accepting of differences when they are younger. Growing up with someone with speical needs doesn’t seem so special if it’s how it’s always been. I see one 6 year old little girl with severe cerebral palsy (GMFM V for those technical people). She lives in a small community and has been with her peer group from kindergarden. Now in her 2nd year at “big” school she is just “”Jess”. At mat time one of her classmates, without any prompting, will take the book the teacher is reading and hold it up close to her so she can see the picture. Who ever sits next to her will turn her page if necessary and the kids love to help her during library time or arts. The teachers and therapists have modelled facilitating augmentative communication with her and the kids naturally follow the adults. This provides invaluable opportunities of natural and spontaneous communication. I can see Jess as an adult in this community where neighbours stop and talk to her, feeling completely at ease with her augmentative communication, her wheelchair, her oxygen cylinder, her gastrostomy tube - because they’ve been doing it since they were in kindergarden.

3. High expectations facilitate high achievement
There’s no denying it – The standard of education at mainstream schools tends to be higher. When we expect more from children, they often meet those expectations. Healthy competition and peer pressure can be, well … healthy. 

4. There’s not always strength in numbers
Being one of a few instead of one of many can be an advantage. Many mainstream schools I have worked with are eager to do the best for a child that comes into their school with special needs. Processes, polices and procedures are not yet established (or set in stone) and the schools are fresh and enthusiastic to find innovative solutions to make things work. 

Mainstream Con’s:
1. Inclusion? 
Inclusion is still an evolving idea that people are wrapping their heads around. The first time I saw a swing for a wheelchair in a public playground I was SUPER impressed. Now that’s inclusion, I thought. When I see that swing now it makes me a little less happy. It has a huge gate around it that’s always closed lest some poor “normal” kid get’s bumped by it. It stands alone completely separate from the rest of the playground and it's lonely! I’ve never seen it used by a kid in a wheelchair.
Sway Fun Photo courtesy of Landscape Structures Inc.
My concept of inclusion has evolved. It can be tricky to know if we are being inclusive or merely talking the talk. Having Tommy help with athletics day by timing the other kids at the finish line is not inclusive just because he is included. When I worked at the special school we didn’t have to think about “including” kids in wheelchairs in sports. The sports were geared for them and there were always enough kids to make a team. Inter-school sports with the other special schools was for all the kids, not just as tokens, but as participants. In a mainstream school, kids with disabilities are few in number so less opportunities exist naturally. 

“What to do with Johny in the wheelchair or Susan with the walker during athletics or rugby?” 

“How do we get that big power wheelchair onto the steps for the class photo?” 

“If everyone is sitting on the floor for floor time activities, does Camilla feel part of the class strapped into her adaptive seat?” 

How do you get a game of wheelchair soccer happening when there aren’t enough wheelchairs?

2. It’s not for everyone
It still flabbergasts me every time this happens, but discrimination, insensitivity and stupidity still abound. Some schools are just not that into it. They don’t want the headache and disruption of having someone in their class who can’t follow the instructions or even worse, has equipment that takes up space or doesn’t fit in with the layout of the other desks. I had one teacher (this year people!) tell a child in a power chair that he was not allowed on the grass during playtime because the wheels tracked mud and grass back into her classroom – I kid you not! It takes a lot of work, advocacy and head/heartache for parents who’s kids may be zoned for these kind of schools to change minds, perceptions and practices. 

3. Peas in a pod
It’s nice to fit in. To be surrounded by people who get you because they are just like you. That was one of the biggest draw cards for being pro-special schools way back when. It’s one of the reasons parent networks are so useful – It’s just so much easier to be yourself when you are with other people who are dealing with similar things to you. On the flip side, it takes a lot of effort to be the one that stands out – looks different, different needs, different pace. Special schools give kids a sense of just being one of the crowd. It may be good for kids to be in a school where they can develop their ego and self-confidence first before having to take on the world. I know that eventually they will have to, but earlier isn’t always better. We don’t put toddlers behind the steering wheel of a car and say, “Well you know one day you’re going to have to drive, you may as well start practicing now”

4.    Actually, there may be strength in numbers
Having kids with similar needs under one roof makes it much easier to build resources and expertise. Special needs schools can have teachers experienced in dealing with special needs. They can house on-sight therapists and provide specialist equipment. They have programmes and  facilities, policies and procedures that are tried and tested, that have been fine tuned and work well. This is especially true for schools that cater to specific impairments such as visual impairment or severe intellectual impairment. Salisbury school in New Zealand is just such an example. Many parents have seen so much benefit for their kids attending this special school that they went up against the government in an epic battle to keep it from being closed (link)  
There’s no one size fits all, so it’s good that there are choices. Personally I lean towards mainstreaming, but there are many kids I feel are better for being in a special school and having access to specialist teachers and resources. As teaching becomes more individualized and less prescribed I think the boundries will blur more. Similarly, as the disabled community continues to stand up and be heard, the solutions to inclusion barriers will become more accessible. In the meantime though, I think it’s about finding a school that “gets” your child and is willing to work with you to meet your aspirations for them as their parents. If think if you have that, you probably have the right school for your child.

Wednesday, 21 August 2013

Google Maps and Therapy - Navigating the Journey

Last year I went on a camp for children with disabilities. I met a mum there who made me really think about my role as a therapist. She had twin boys, both with the same serious medical condition. For both her boys she had traveled for more than a decade in the world of medical jargon, surgeries, doctors, hospitals, therapies, special schools and everything else that comes with that diagnosis of special needs.  The first night she shared a little of that journey with me. Underneath her friendly chatting, I sensed this mum was constantly in fight mode. I guessed a lot of it came from the years of stress and frustration of fighting for her boys and dealing with stupid medical people who just didn’t get it. 
She made me a little nervous. I wasn’t her therapist and I didn’t have my own child with a disability. I think she thought I was one of those therapists who didn’t get it. 
She was right of course – I have children who are special and they have needs, but I really don’t know what it’s like to have a child with special needs, just like people don’t know what it’s really like to be a parent until they are one. Yes you can listen to stories and imagine how it would be, but you never really KNOW until you’re living it. 
I’ve always thought that becoming a parent made me a better therapist and I wondered if having a child with special needs would help even more.
Would it make me a better therapist if I really KNEW?
Maybe, but I think that therapists are meant to be the google maps of the special needs world.   We need to know the country you’re in, where to find your city and even your street. If we access street view we can see what your house looks like and we might even be able to see up your driveway. We get really close, but we can’t come inside, taste the coffee you’re drinking or help wipe the spills from the cereal bowl … and I’m not sure we’re supposed to. 
How can we figure out the best route, if we’re sitting inside with you?
That little bit of objectivity is important in providing the best that therapy has to offer. As a parent, I know how hard even the simplest addition to an already over scheduled day can be. As therapists we ask for a lot of extra’s to be squeezed into your day. If we were sitting down at that breakfast table with you and walking in your shoes, perhaps we wouldn’t dare – it would be too much to expect. 
We give advice, recommendations, instructions and programmes that in an ideal world could be carried out religiously and exactly. We don’t expect they will be, but once you know what and how, you can figure out what works for your family. 
When I am planning a journey, I open google maps, put in the destination and choose the best route. Google maps gives me route options but I get to choose which way to go.
That’s how I think a therapy should be  too.

When you start a journey in unfamiliar territory, you might choose to stick to the main roads and follow the therapists every word and recommendation. When you’ve been there for a while, you might decide to try a few different routes to see which you prefer. You might even get adventurous and move off the beaten track to try some little known trails like alternative therapies - or even make your own trails. 
Some families take the scenic route, a detour, or stop off along the way for a bit of a break. It is a long journey after all, with a fairly obscure destination right? Walking? Talking? College? Sleeping through the night? Independence? Getting to the next birthday? 
Everyone is different and therapists  have the privilege of exploring so many diverse paths with the different families we work with. Some families even show us new paths we didn’t  know about. This is good. It helps us expand and update our therapy-google map.

We work with kids at various ages and stages so we have a different perspective to parents  immersed in their own child's current needs and stage.  That’s what gives us the google map view, the big picture. Our training gives us the skills to outline the main roads. Our experiences with the different families gives us the objectivity to detail the layout of the land, the obstacles and the shortcuts. 
I wanted to tell this mum at the camp that I didn’t know how it was to walk in her shoes, but I could see she was on a bumpy trail and there was another road a little bit a way that might be more comfortable, if she would just make a small detour. I didn’t though, she was a bit scary to talk to and I’m wary of stepping on toes or giving unsolicited advice – or maybe I just approached her incorrectly, but I wished I could have said something to help her. The therapist in me always wants to "fix" things - even when they are not mine to "fix".
In any event, because I am a physiotherapist I have to add in this little snippet of advice before I am done with the google map therapy analogy:
Whichever route you choose for your children, remember to keep your tank full (do your stretches), your tires pumped (look after posture and alignment) and avoid the potholes (don’t allow detrimental habits to creep in). I’ve seen families where the mainstream basics have been thrown out the window in their journey down a less explored route. It's hard to get back onto the main roads when you don't have a spare tire.
In the end though, the journey belongs to your family and your child.
It’s always a privilege as a therapist to come along for the ride. I hope you share your experiences  here so I can continue adding details to my google-therapy map.

Wednesday, 17 July 2013

Powered Wheelchairs and toddlers: Is it a good idea?

I have a little nephew. He lives overseas and so we “talk” on skype on the ipad. At 6 months he already knew how to flick through photos on the ipad and now at a year he can select his favourite app and open it on his own. Although I’m sure he has a particular set of genius qualities, the truth is he has been born into an age where technology is developing faster than the science fiction writers can even imagine it.  And he loves it! Babies take to technology like fish to water. Who hasn’t encouraged a baby to move by dangling that TV remote or cell phone just out of their grasp? 
But what if, no matter how much your toddler wants that TV remote, he can’t roll or crawl or move his body enough to reach it? 
1.     Well … we can be thoughtful and observant. We can learn to understand his gestures and get him what he wants (read: learned dependence on mum for life)


2.     We can leave him to struggle until he finally develops enough skills to get there on his own, or enough language to ask for what he wants (read: years of frustration and high possibility of learned helplessness + many missed opportunities to learn new stuff)


3.     We could embrace all that technology has to offer and pop him in a wheelchair with power and a joy stick … and he can get to it himself

“What?” I hear you gasp, he’ll never learn to walk if I put him in a wheelchair. Well maybe YOU didn’t gasp, but it’s a common fear among parents, teachers and even therapists.

For a while now though, there has been a growing body of evidence in favour of putting babies and toddlers into wheelchairs, floor sitters or standers with power for independent mobility. Babies as young as 7 months have been given a joystick so they can whip around the therapy room. The research has shown better learning, better social skills, better emotional maturity and even better motivation to try and move on their own.
Far from seeing the power wheelchair as a last resort, they are being seen as a means to an end. It reminds me a lot of how speech therapists were reluctant to let children use signs and gestures in case they became “too lazy” to learn to talk. Nowadays we know that teaching early signing speeds up language development and it’s even become a popular fad amongst the masses (“Meet the Fockers is a case in point).
A more sensitive issue might be the fact that having a wheelchair just shouts “disability” to the rest of the world. Many parents opt for buggy’s with postural support as their first type of “adaptive equipment” because the wheelchair thrusts a significant bag of emotions, attitudes, beliefs and feelings right in the face of a situation that parents may still be coming to terms with. 
There is no easy way around this but society’s perceptions are changing thanks to the tireless work of the disabled communities and their families all over the world.
Have a look at this amazing video on using a power chair for artwork and scuba diving to give you an idea. 
On the upside, as most parents watch their toddler grow in skill and independence initial reservations are short lived. Also, because the companies making these little devices are making them specifically for toddlers, they are not just miniature-ising adult versions and they can look really cute.
I wonder if one day getting a wheelchair for your non-mobile toddler will be in a similar realm to getting glasses for your short-sighted toddler? Not something you want your toddler to need, but no questions about getting it if it’s needed. 
Clearly I am on the pro-power mobility team, but there are some cautionary tales to tell too.  

Take heed! 
  • Increased wheelchair use WILL equal increased risk of contractures – no if’s or but’s! and this WILL result in decreased walking ability. 
  • Over-reliance on power mobility WILL result in muscle weakness and decreased fitness and this WILL result in decreased walking skills, particularly during growth spurts 
  • Whipping around without good postural support WILL result in postural deformities that can affect health and comfort, causing pain AND WORSE down the road
  • Putting a toddler in a powered vehicle can be dangerous to the toddler themselves and others around them. 
    • Riding over their friends / siblings is a real possibility and the vehicle they are driving will not transmit the sensory feedback of “ouch” that physically bumping into their friend or sibling might have. 
    • Riding off the edge of a raised surface or falling down stairs becomes a new danger. In my experience, parents who have been “trained” by their littlies that they can put them down and find them in the same place 5 minutes later, are not used to vigilantly watching their toddlers every move. A parent who already has a mobile toddler that can move at the speed of a powered mobility device has usually been “in-training” for quite some time. These toddlers hone their parents skills by such techniques as attempting to dash across a busy road each time the car with the boy racer screeches by and other such effective hair raising escapades. Suddenly having a mobile child does requires a crash course in the practical aspects of fearless toddlerisms.
Giving children their independence through movement has so many far reaching benefits for their growth as human beings.  I believe it's well worth the effort as long as the risks are managed. Here are my ideas on how to do that:
1. Stand as much as you sit 

In other words, if your child is using a wheelchair, they should spend an equal amount of time standing as sitting to prevent contractures. This can be in a standing frame or assisted standing to play
at a surface with good postural alignment.
NOTE: Standing and walking in a walker will not counteract the contracture threat of a wheelchair! 

If the powered mobility aid only does standing, don’t forget to stretch in long sitting and cross legged sitting – contractures work in the reverse too.

Tummy lying with a comfortable prone cushion can also counter the contracture threats of too much sitting (if you can get them to lie on their tummies long enough!)
Some power devices can do standing and sitting – Bonus!!
2. Power for distance and play, walking for everything else. 

If your child has the potential to walk then apply a 60:40 rule. At least 60% of the time should be out of the mobility device practicing walking or other independent mobility skills.

Treadmill training is showing some positive results – ask your therapist about this or have a look at this review from Child Development and Rehabilitation

Adapted tricycles and new-age walkers should also be a part of the day and play. The more ways your child has to move, the greater the benefit – variety is key.  

3. Safety overkill and hover like a helicopter.

Be vigilant, be careful, assess every new environment for hazards. Like any toddler – just when you think they’re safe, they’ll find a cliff to ramp off. 

Make sure you have control over the power switch – some chairs come with parental over ride remotes. 

For beginner drivers, the joystick and speed setting can be limited to provide only certain directions or speeds. 

Don’t forget to train the other kids on how to be safe around the power chair and how not to touch the joystick or power buttons – they belong only to the driver. 

4. Good alignment grows good bodies

Don't let your toddler hoon around in something that doesn't support good postural alignment. The importance of doing things well is explained very eloquently in this blog by Karen Pape. MD.
Make sure whatever you are putting your toddler into supports their growing bodies appropriately.

Powered mobility for toddlers is not yet considered mainstream therapy and so it’s not easy to find appropriate power. Here are some links. Please add to them if you can.:
Provide sit-to-stand power chairs, adaptive go-karts and The Boss (a toddler go-cart)
Provide the mini-bot (a standing power device)
 Provide innovate wheelchairs that aim to provide active people with disabilities as much freedom as possible.
Provide the wizzy bug – a cute toddler sized power chair 
 This link will take you to the University of Delaware's project on converting cute kids cars for adaptive mobility - well worth a look!
This link will download a power point presentation from the internet on powered mobility in toddlers
Blog links from a parents perspective
Here's some great blogs to read from parents who've been there - done that! Please add more if you can - Thanks
Just stumbled across the cutest kid ever seen on wheels at
check out his FB page:

Sunday, 30 June 2013

Stretching and Cerebral Palsy

The Scenario
I used to see a 2 year old girl with diplegic type cerebral palsy who had just learnt to walk - we’ll call her Janey. Mum was keen to do the best for her wee girl and had taken her to a local physio who told her that stretching was a cruel and unnecessary hardship to inflict on her daughter.
Stretching, it would appear, is loosing favour. Researchers are trying out different stretching programmes and finding that although regular stretching does definitely allow you to tolerate stretching better – it doesn’t actually seem to change the underlying muscle properties, it doesn’t add to functional skills and it doesn’t improve participation.
The Question
And yet stretching is still out there as an important part of most treatment (or sports) programmes. Are we just behind in catching up with the more up to date research or is there some (as yet unproven) benefit to stretching that we see or believe in?
The Scenario continued ...
  On a personal level, I like to take my dogs out for a run a couple of times a week. I never stretch before the run (who has time for that?) but I do a quick stretch afterwards. If I don’t, I find the next run “heavy”. I doubt you could measure the difference, but I feel it. 
 In my practice I am lucky enough to see very young babies and toddlers. Very few of them show the muscle tightness and increased tone that we see in the older kids with cerebral palsy. Janey was a case in point. She walked with a typical diplegic gait – knee’s flexed, hips internally rotated and adducted and ankles plantarflexed. Her range of movement was normal though and as she was walking independently by 2 years of age, I put her at GMFCS level I.
Did I recommend stretching as part of her programme?
Yes I did, in a functional NDT approach AND a traditional “have a good stretch after your nice warm bath” approach – but mum preferred the approach of the “stretching is cruel” physio and I didn’t see Janey again for nearly 3 years.
Jump to 2013 and Janey is back in the system looking at possible surgery for contractures of both legs. She can still walk independently but needs a wheelchair for distances and can’t run or jump.
Are you thinking we’ve dropped to GMFCS level II?
 Would she have maintained her GMFCS level and not needed surgery if mum had stuck with the more traditional approach? Who’s to know?
I haven’t found a research article out there that looks at stretching from this very long term perspective (please, please share if you know of any) but based on many other kids I have worked with, I think there’s a pretty good chance she would have been better off than she is now.
Do you brush your teeth?
I think about stretching like I think about brushing your teeth. If you miss a few days here and there you won’t really notice any difference, but if you constantly forget to brush your teeth – you can be sure that cavities and tooth decay will follow. Muscle contractures creep up on children with cerebral palsy in a similar fashion. If you stretch inconsistently or hardly ever – one day you will notice that your child has a knee that no longer straightens all the way or a foot that doesn’t go flat anymore. If good stretching is part of your routine, I expect your child will be more likely to pass through all the growth spurts of childhood without developing significant contractures.
An article in 2008 titled, ” Stretching with children with cerebral palsy: what do we know and where are we going”. [i] cautions therapists about using stretching as a clinical intervention because there are no studies showing a direct relationship between increasing range of movement and increasing function. They also comment in this article that passive stretching techniques are “not fun”.
My Thoughts
Back to my tooth brushing scenario … who ever said body maintenance was fun? Well of course you can try to improve the “fun-ness” with musical toothbrushes, star-charts and other gadgets – you can do this with meaningful games and activities during stretching too.  Saying that stretching doesn’t lead to improved function is like saying that brushing teeth will not lead to improved chewing. Imagine if we cautioned dentists against recommending brushing teeth because it didn’t help with chewing and wasn’t fun!
They go on in the article to recommend participation in community activities like Tai-chi, cycling and ballet in place of traditional stretching. To me that’s like recommending your child chew fluoride toothpaste instead of brushing their teeth. It’s a great suggestion, certainly nicer to do with some good benefits– but it doesn’t replace the boring old toothbrush.
So … the evidenced base for stretching is poor but I’m not ready to throw the baby out with the bathwater. I think stretching should be part of the normal family routine and no more painful or forced than .. say .. umm … tooth brushing! (Just a side note - I am talking about stretching to maintain good range, not where contractures and fibrosis already exist.)
I see stretching as a small part of a big puzzle. Keeping your child’s teeth healthy with a  good tooth brushing routine would be beneficial in enhancing your child’s social interactions – who couldn’t resist a pearly white smile? But you wouldn’t look at tooth brushing as a way to improve social skills would you? Similarly, stretching alone won’t achieve any functional goals, but (getting technical here) a good stretching routine goes a long way to maximising benefits of a more comprehensive programme by allowing for a greater variety of movement possibilities, decreasing effort and modulating spasticity[ii],[iii],[iv], [v],[vi].
Your thoughts?
So evidence based practice says – stretching unlikely to be beneficial – my clinical reasoning says stretching is worthwhile and essential – what do you say?

[i] Wiart et al. Stretching with children with cerebral palsy: what do we know and where are we going?. Pediatric physical therapy : the official publication of the Section on Pediatrics of the American Physical Therapy Association (2008) vol. 20 (2) pp. 173-8

[iii] Salem et al. Effects of prolonged standing on gait in children with spastic cerebral palsy. Physical & occupational therapy in pediatrics (2010) vol. 30 (1) pp. 54-65
Bottom Line: Prolonged stretching does improve function (improved walking) but needs to be done  for sufficient length of time and the effects don't last so it has to be repeated to get the benefits.   
[iv] Tremblay et al. Effects of prolonged muscle stretch on reflex and voluntary muscle activations in children with spastic cerebral palsy. Scandinavian journal of … (1990)
Bottom Line: Prolonged muscle stretching (30 minutes on tilt table) decreased spasticity in the muscle  up to 35 minutes after the stretch.
[v] Pin et al. The effectiveness of passive stretching in children with cerebral palsy. Developmental Medicine and Child Neurology (2006) vol. 48 (10) pp. 855-62
A review evaluating the research on stretching shows some evidence for the benefit of prolonged stretching.
[vi] Pin et al. To stretch or not to stretch in cerebral palsy. Dev med child neurol (2007) vol. 49 (10) pp. 797-800
A valuable read summarising the reasons we should keep stretching