S Cubed is our brand new, one of a kind, non-invasive treatment programme for neurological scoliosis. As it stands, there is no NHS-backed evidence for the treatment of scoliosis in children with neurological complex needs. This is because the NHS is regulated by NICE Guidelines to make sure its treatments WORK. This is a great thing! Most of the time. However, in very rare conditions, sadly, NICE guidelines do not work in our favour.
For a treatment to be approved as ‘successful’ in the NICE Guidelines, it needs to be gold standard. This means randomised controlled trials (RCTs), large data sets with thousands of children, and longterm follow-ups of over 10 years. This is to make sure that treatments work well, and they work for the long term. Makes sense, right? Unfortunately the downside is that children with rare conditions are excluded. Here’s how:
- RCTs for promising treatments do not pass ethics tests. This is because if a treatment is likely to be effective based on a similar treatments, it is unethical to take two groups of disabled children, and only give one the treatment. This means that these gold standard studies are not available for children with rare diseases.
- Large data sets are impossible to find on children with rare diseases. Kids with complex needs make up less than 1% of the population, and within that 1%, there are many different types of diseases and presentations. So finding data on a large group of thousands of children, with the same condition, and the same presentation of that condition, is almost impossible.
- Long-term follow-ups are difficult to standardise. The skills and presentations of kids with complex needs vary throughout life, depending on many different factors. For example, over a 10-year follow-up period for a study, a child may have had a few hospital admissions, an orthopaedic surgery, a new gastrostomy and a new type of device fitted to control seizures. This would exclude them from participating in long-term follow-up research, as there are too many different variables to discover if the treatment worked.
All of this means that approved research for neurological scoliosis in the UK is very limited. At Bumble Bee Physio, we are tired of noticing early warning signs for scoliosis, and having no standard treatment method, and constantly hearing ‘monitor for a year and then another x-ray’ or ‘watch closely and she can have surgery in two years’. Our physio team has noticed small and consistent changes among our clients who go on to get scoliosis, and we have searched high and low for research in other parts of the world.
Current UK scoliosis treatment
At the moment, the UK’s treatment for scoliosis is based on Idiopathic Scoliosis. This is a type of scoliosis that randomly occurs in children and adults with no disability. These people can follow instructions and move actively, taking part in very specific stretches, strengthening programmes and positions. However, we know that children with complex needs are very different.
Currently, our clients may begin with a small lean or preference, to one side. This is noticed in supported sitting, and they may lean over in their chair. This is usually then x-rayed, in any position, from sitting with varying amounts of support, prone lying (on front) or supine lying (on back). The surgeon usually looks at the spine and gives a Cobb Angle, this is the sideways curve of the spine, in a number format. If the angle is small or non-existent, clients are told to ‘monitor’ or wait. They are usually seen every six months or year, over a period of time. When the curve becomes severe, our clients are offered braces. The only evidence for braces is for idiopathic (non neuro) scoliosis. They will keep being x-rayed and these results will be compared. Sometimes they are x-rayed in a different position every time, meaning comparison is not possible. When the scoliosis is extremely severe, squashing a lung and impacting on everyday quality of life, our clients will undergo life changing, extremely invasive surgery.
The problem
As a team of experienced physiotherapists, we have the following problems with the current scoliosis treatment.
- Scoliosis is a 3D problem, and we know that it leads to rotation of the hips, chest, shoulders and ribcage. The Cobb angle shows a 2D image. This is therefore not a good picture of the overall body shape of someone with scoliosis.
- The evidence for braces is extremely limited in neurological scoliosis. Children with idiopathic scoliosis can understand the fine details of why they are wearing the brace. They can also take part in exercises for very small and specific muscle groups, and understand instructions to lean the opposite way, and strengthen against the scoliosis. In our clients however, we find that a brace sometimes does the opposite of straightening the spine. In children with trunk weakness and low tone, they accept and lean on support given to them. When a brace is given and has more support on the weaker side (to straighten the spine), they are actually more likely to lean into that support, causing the scoliosis to worsen. This is the case with some of our clients – though we cannot speak for any specific child until we have met them.
- There is no conservative treatment option, other than a brace. Even though many of our superheroes are determined, motivated, and able to move actively, scoliosis programmes do not exist for them. There is a huge amount of evidence around strengthening, stretching, and balance exercises reversing scoliosis in children with idiopathic scoliosis, and yet none of this is applied to kids with neurological scoliosis. We certainly would not be able to use it all, however we do think that our superheroes should be given the option of this management, long before any surgery is considered.
The solution
At Bumble Bee Physio, we have knocked our heads together, looked at our own backs, our dolls’ backs, our clients’ backs, and looked with a fine tooth comb for research on scoliosis. We have found that by putting many different techniques together, we have stabilised clients who are leaning, and doubled or tripled the length of time they are able to carry out functional activities, by straightening their spine during that activity. Like most treatments, we find that the earlier we treat, the better. But no matter how severe your child’s scoliosis is, you can always ask us for a free consultation, and we will let you know if they will be suitable for S Cubed.
Assessment
We have had lots of fun learning how to use the Anatomical Measuring Instrument (AMI) by Simple Stuff Works. This measures the Goldsmith Indices of Body Symmetry, the only validated and objective way of measuring body shape available. This simple, comfortable and pain-free assessment measures 3D rotation and lateral curvature of the chest, ribs, trunk, hips, and wind-sweeping of the legs. In our experience, all of these factors are visible long before scoliosis. Having this written down in a numerical format helps us to determine exactly which parts of the body are affected, and how to rectify this.
Treatment
Strengthening
We have used research from Professor Meir Lotan in Israel, Ginny Paleg in the USA, and our own experiences on children with low tone and Rett Syndrome, to come up with a strengthening programme. By using the AMI results and our own assessment, we can determine which body parts are weaker and which are stronger, and then use various exercises to target the weaker side. We do this by placing our superhero in an antigravity position such as supported standing or sitting. We then tilt them to each side, to work out which side flexors are weak. And we then rotate them to each side, to work out which rotator muscles are weak. We then have a magical plan for strengthening the weaker muscles!
Stretching
Also based on Professor Meir Lotan’s work with children with low tone, we use overcorrection stretches. This means positions that stretch to the opposite side of the scoliosis, and further. These positions will be taught to caregivers and family members, and will need to be carried out for sustained periods of time in between the sessions.
Positioning
Also based on Professor Meir Lotan’s work, and extensive trial and error with our amazing superheroes, we have perfected our positioning programme to be carried out for several hours during the day. This involves tilting our superheroes’ equipment! Sounds crazy, but it really works! We have found incredible results in spine position, endurance, stamina and strength by utilising these positions. Which position your child will use depends on how severe the scoliosis is, how much support they need in an anti-gravity position, and weather or not their scoliosis is fixed.
Bracing
Again, based on the genius that is Professor Meir Lotan, we use arm braces to help us control the stronger upper limb. Repetitive arm movements, and arm preferences, can have a huge impact on the formation of scoliosis and the direction it takes. We will assess your child, and work out if their upper limb movements are affecting their scoliosis. If the answer is yes, we use specially designed braces that allow as much freedom of movement possible, while giving symmetry to the most important joints. We always work with all professionals in your child’s care, to determine how much bracing is appropriate for their needs.
Physical activity
Research suggests that active movement helps to prevent the formation of scoliosis, the rate of progression of it, and even reverse it in rare cases. We assess all children to work out what they are capable of and prescribe as much active movement as possible. This may be walking with assistance, pedalling on a trike, using assistive equipment such as a Glider, or something as simple as kicking a ball or popping bubbles!
Teamwork
As with any treatment we prescribe, we always work as a team with all professionals involved in your child’s care. We have taken our S Cubed treatment approach into three special schools with clients on the programme and have seen fantastic co-operation and enthusiasm from the staff. We make sure the programme is realistic and achievable, and we usually educate school staff, including teachers, teaching assistants and physiotherapists, on our approach first. When they understand what we are doing and why, we can implement small changes into the child’s position at school. For example, wearing a brace on one arm during certain activities.
Who will benefit?
Every child is completely different, and the best thing to do is chat to one of our friendly physios if you think your child may benefit from S Cubed treatment. We have some rough inclusion criteria, but are happy to work with most children who have, or are at risk of developing, scoliosis. As with most treatments, the less severe the scoliosis, and the younger the child, the better the outcome. However, Professor Meir Lotan has seen excellent results even in adults! So if we think your child could benefit, we will always say yes. Your child does not need to have scoliosis to benefit from this treatment. In fact, we are really passionate about using this treatment to prevent it happening, and to provide lifelong tips and exercises to avoid it.
What is included in the package?
Initial consultation
This is free of charge and consists of a phone call with a physiotherapist to see if your child may benefit from S Cubed. The physio will ask you things such as your child’s age, diagnosis, any x-ray results from scoliosis and other joints, their current equipment and what motivates them!
Home visit assessment
The first stage is a home visit with two physiotherapists and the AMI tool, to measure body asymmetry. Other assessments will also be carried out, including bench sitting, supported standing, range of movement, and observations of gross motor skills, positions and equipment. You will be asked lots of information at this appointment, but we always have the option of filling in a form instead, if your child doesn’t like being talked about at home! At this assessment, the first part of the programme will be discussed and taught to the child and family. This will usually involve one position, and one strengthening activity. Any more than this, and you will be overwhelmed! You will receive a written report with goals, a bespoke programme and the AMI results.
Home visit treatment sessions
You will have six home visit sessions for up to an hour, with one physiotherapist, going through the S Cubed treatment for your child. Their bespoke programme will focus on all the aspects above: strengthening, stretching, positioning, bracing and physical activity. At each session, your physiotherapist will discuss the weekly ‘homework’ and how to incorporate this into daily activities. There is a need for a lot of work to take place outside the treatment sessions. During the sessions, more complex tasks are carried out, which require very specific handling skills. This is usually strengthening and positioning. Stretching, bracing and physical activity will be discussed, and relevant activities will be provided. These require much more than an hour a week for the intervention to work, so we teach them caregivers during the home visit to carry out for an extended period of time. There is a rough example timetable below, to see how much work is expected from the family.
Reassessment
At the end of the six-week treatment block, a reassessment will be carried out with the AMI tool. We will provide an updated report, with an updated programme and goals and the AMI results. Ongoing therapeutic activities will be discussed and demonstrated, and any equipment recommendations or referrals will be made.
Example timetable of S Cubed treatment
Monday | Tuesday | Wednesday | Thursday | Friday | Saturday | Sunday | |
Week 1 | Physio session: assessment. Teaching parents sustained stretch 1, and use of arm brace. | Brace on one arm for five minutes. | Sustained stretch 1 for 10 minutes.
Physical activity for 30 minutes: trike. |
Brace on one arm for 10 minutes. | Sustained stretch 1 for 10 minutes | Brace on one arm for 15 minutes.
Physical activity for 30 minutes: gait trainer. |
Sustained stretch 1 for 10 minutes. |
Week 2 | Physio session: strengthening weaker side for flexion and rotation. Teaching parents sustained stretch 2. | Sustained stretch 2 for 10 minutes. | Brace on one arm for 30 minutes. | Sustained stretch 1 for 15 minutes. | Brace on one arm for 60 minutes. | Sustained stretch 2 for 20 minutes. | Brace on one arm for 60 minutes. |
Week 3 | Physio session: strengthening weaker side for flexion and rotation. Teaching parents asymmetrical tilted position 1. | Sustained stretch 2 for 20 minutes.
Asymmetrical tilted position 1 for 10 minutes, during dinner time. |
Sustained stretch 1 for 20 minutes.
Brace on one arm for 60 minutes, during rest time in comfy chair.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: trike. |
Sustained stretch 1 for 20 minutes.
Asymmetrical tilted position 1 for 20 minutes, during dinner time. |
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: gait trainer. |
Rest. |
Week 4 | Physio session: strengthening weaker side for flexion and rotation. Teaching parents asymmetrical tilted position 2. | Sustained stretch 2 for 20 minutes.
Asymmetrical tilted position 1 for 30 minutes, during dinner time. |
Sustained stretch 1 for 20 minutes.
Brace on one arm for 60 minutes, during rest time in comfy chair.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: trike. |
Sustained stretch 1 for 20 minutes.
Asymmetrical tilted position 2 for 10 minutes, during dinner time. |
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: gait trainer. |
Rest. |
Week 5 | Physio session: strengthening weaker side for flexion and rotation. Teaching parents strengthening for weaker side in standing. | Sustained stretch 2 for 20 minutes.
Asymmetrical tilted position 1 for 30 minutes, during school. |
Sustained stretch 1 for 20 minutes.
Brace on one arm for 60 minutes, during school.
Strengthening weaker side in standing for 10 minutes after school.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: trike. |
Sustained stretch 1 for 20 minutes.
Asymmetrical tilted position 2 for 30 minutes, during school.
Brace on one arm for 60 minutes, during school.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: gait trainer.
Strengthening weaker side in standing for 10 minutes after school.
|
Rest. |
Week 6 | Physio session: strengthening weaker side for flexion and rotation. Teaching parents strengthening for weaker side in standing. | Sustained stretch 2 for 20 minutes.
Asymmetrical tilted position 1 for 30 minutes, during school. |
Sustained stretch 1 for 20 minutes.
Brace on one arm for 60 minutes, during school.
Strengthening weaker side in standing for 10 minutes after school.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: trike. |
Sustained stretch 1 for 20 minutes.
Asymmetrical tilted position 2 for 30 minutes, during school.
Brace on one arm for 60 minutes, during school.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: gait trainer.
Strengthening weaker side in standing for 10 minutes after school.
|
Rest. |
Week 6 | Physio session: strengthening weaker side for flexion and rotation. Teaching parents strengthening for weaker side in standing. | Sustained stretch 2 for 20 minutes.
Asymmetrical tilted position 1 for 30 minutes, during school. |
Sustained stretch 1 for 20 minutes.
Brace on one arm for 60 minutes, during school.
Strengthening weaker side in standing for 10 minutes after school.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: trike. |
Sustained stretch 1 for 20 minutes.
Asymmetrical tilted position 2 for 30 minutes, during school.
Brace on one arm for 60 minutes, during school.
|
Sustained stretch 2 for 20 minutes.
Physical activity for 30 minutes: gait trainer.
Strengthening weaker side in standing for 10 minutes after school.
|
Rest. |
Week 8 | Physio session: re assessment | New home and school programme to be continued. Reviews every 3-6 months, depending on needs. | Rest. |