Spasticity Management Consultancy
From Botulinum Toxin to Selective Dorsal Rhizotomy (SDR) and Intrathecal Baclofen (ITB), Caroline has a wealth of experience and can give you her time and expertise to talk through the available treatment options. Caroline is highly specialist in the assessment and treatment of spasticity. Perhaps a treatment has been suggested to you and you would like a second opinion? Maybe you have heard of a treatment and you don’t know if it would be suitable for your child or how you can access it. Caroline can help you to formulate a spasticity management plan that’s right for your child.
SDR:
Do you wonder if SDR may benefit your child but your local Physio isn't familiar with the surgery?
Are you are already waiting for an assessment at an SDR hospital and are nervous about how to prepare your child for the appointment?
Is your child on a waiting list for surgery and you want an individual specialist program to maximise this pre-op time?
Has your child already undergone SDR but is no longer under hospital follow-up. Would you value an expert review and program of what to work on next?
Are you living in South Devon and looking for regular SDR rehab delivered by someone with top experience?
Wherever you are in your SDR journey,
please contact Caroline to see how she can help your child reach their full potential.
Caroline was delighted to be asked to present about SDR for the charity Gympanzees. View her presentation, where she talks about:
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why movement can be difficult for children with CP
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spasticity and dystonia
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how a child moves is classified and assessed
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spasticity treatment options
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SDR including how you can access SDR for your child.
[Please note the video link will open in YouTube which may also show adverts and additional content.]
Click Here to view the slide presentation which is discussed in this video.
A transcript of the video will also be available shortly and this includes slide numbers so that you can refer to the presentation.
Useful links for SDR:
The Gross Motor Function Classification System is used to grade how children who have CP typically move around. You can work out your child's level if you don't already know it by reading the descriptors. The Gross Motor Function Classification System (GMFCS)
The Gross Motor Function Measure is an assessment tool performed by a Physiotherapist which measures changes in the gross motor function of a child who has CP. It looks at their ability in lying and rolling, sitting, crawling and kneeling, standing and walking running and jumping. The Gross Motor Function Measure
The National Institute for Health and Care Effectiveness provides national gudiance and advice to improve health and social care. They published guidelines in 2012 for the management of spasticity in under 19s which include recommendations about SDR.
NICE spasticity in under 19s: management
NHS England published a clinical commissioning policy in 2019 on the use of SDR for the treatment of spasticity in CP for children aged 3-9.
NHS England: Selective Dorsal Rhizotomy for the treatment of spasticity in Cerebral Palsy
Below are the funding criteria and Physiotherapy recommendations from this document.
NHS England funding criteria for SDR:
a) The child is aged 3 years to 9 years inclusive with a diagnosis of cerebral palsy with spasticity mainly affecting the legs;
b) The child has dynamic spasticity in lower limbs affecting function and mobility and no dystonia;
c) The MRI brain scan shows typical cerebral palsy changes and no damage to key areas of brain controlling posture and coordination; *
d) The child functions at GMFCS level II or III; see below for more about GMFCS.
e) There is no evidence of genetic or neurological progressive illness;
f) The child has mild to moderate lower limb weakness with ability to maintain antigravity postures;
g) The child has no significant scoliosis or hip dislocation (Reimer’s index should be <40%)
* The typical MRI changes are those of white-matter damage of prematurity or periventricular leukomalacia (PVL). Lesions in basal ganglia or cerebellum are contra- indications to SDR, since they are associated with other cerebral palsy types (dystonia /ataxia).
NHS England guidelines for how much hands-on Physiotherapy is recommended following SDR:
GMFCS Level II
Hospital discharge to 4 months post-op: 2 times per week
4 to 6 months post-op: once per fortnight
6 to 12 months: once every 3-4 weeks
12-24 months post-op: monthly or as required
GMFCS Level III
Hospital discharge to 4 months post-op: 3 times per week
4 to 6 months post-op: once per week
6 to 12 months: once per fortnight
12-24 months post-op: once per 2-4 weeks or as required
Advice for parents/carers whose child has been accepted for SDR
Preparing your child for SDR:
All parents and carers want to help prepare their child emotionally for surgery. In general, when talking to children about big life events it can be useful to take a ‘little and often’ approach rather than have ‘one big conversation’. Something to be mindful of when you talk to your child about the surgery is the language that you use. In the early stages of rehab it will be more difficult for them to sit, stand and walk than it is now. This can be confusing and frightening for children who think that they are having an operation to ‘make them better’. Try talking to them about the operation taking away their muscle stiffness. Explain that their body will feel quite different and it will take time to get used to it. Talk about how they are going to have to relearn how to sit and stand without stiff muscles and that this can be tricky to start with.
Top tips to take with you to hospital:
Wheelchair
Gaiters, if you have your own pair then take them into hospital with you.
The walking aids that your child normally uses e.g. walker, sticks or crutches.
Favourite toy.
Tablet and gadget holder
Long socks to wear with splints.
Loose fitting, cool and comfy clothes. Hospitals are usually very warm so consider shorts and T-shirts for your child and for you.
Your child’s current footwear is unlikely to fit their new splints but are worth bringing with you in case they do. Wait until you get your new splints before buying any new footwear that they will fit in.
A reusable lidded cup for hot drinks for yourself.
Equipment list for rehab at home:
Therapy mat
Therapy bench – adjustable height (GMFCS III)
Aerobics step (GMFCS II)
Wheelie stool for parents/therapist (GMFCS III)
Gym ball
Wobble cushion
Target games
Balloons/balls/beanbags/skittles
Reward stickers for younger children
Treadmills – these take up a lot of space and are very useful for some, but not all children; talk to your Physio if you are considering buying one.
Ijoy – an electronic seat that simulates horse riding and is aimed at increasing core strength. These also take up quite a bit of space and similar activities can be done on a gym ball.
