23 July 2021
With a diagnosis of cerebral palsy, little Sofia has more to contend with than the average four-year-old! But her positive outlook, combined with her family’s support and determination plus orthotics and physiotherapy, are helping her on the way to a bright future.
Nonetheless, it is a journey characterised by challenges. One of these took hold during the COVID lockdown of spring 2020. Sofia started to walk independently during the lockdown but, with statutory services diverted to the pandemic, a poorly fitting pair of orthotics risked hindering her progress.
Enter our orthotist, John Turner, who was able to see Sofia in our Bolton Manchester clinic and get her equipped with a new set of ankle foot orthotics that, according to mum Clare, helped Sofia to work on her mobility as the year progressed.
It was actually thanks to her previous NHS AFOs – or splints – that Sofia was able to begin walking at the beginning of the COVID lockdown, Clare explains. “That early set of splints were some of the best we had received up until that point,” she says. “But being four, Sofia quickly outgrew them, and that was when the difficulties started. As soon as I saw the new, larger AFOs, I just knew they wouldn’t do the job. They were obviously oversized for her. Within half an hour of her getting home and trying them on, I was seeing visible marks and she was clearly uncomfortable. That is a very difficult situation to manage with such a young child. Our previous orthotist did his best to adjust them, but naturally the pandemic was causing problems with supply everywhere – and there is only so much you can do with an existing orthotic to tweak it. So, we ended up in a situation where she had a previous set of orthotics that were too small for her, and her new set didn’t fit properly. My main concern was that we had worked so hard during lockdown to support Sofia in improving her mobility. I didn’t want to risk her going backwards when she had achieved so much, and so we decided to seek a different solution.”
Clare has an active network with other families in similar situations and so enquired with them to see what options might be available. Numerous recommendations to try LOC came through, and so the family decided to book an initial consultation to see if anything more could be done.
“I’m no expert in orthotics – all I knew was that I needed to get Sofia into a pair of AFOs that fitted her and supported her correctly,” says Clare. “When we first saw John (John Turner, Orthotist at LOC’s Manchester Clinic), it was a completely different experience. I was impressed with John’s efforts to explain everything to me. He talked to me about how important it is to get Sofia into the correct position, the role of the AFOs in securing her foot in a downwards position to avoid walking on her toes, and how a badly fitting orthotic could affect her hip alignment and stability. It was a completely different experience from other appointments we have had. John assessed her very thoroughly, took photographs, and ensured that every detail was right - from the AFOs themselves to the wedges he built for her shoes to ensure a good stretch on her legs. It made me realise that the fit of Sofia’s AFOs is not just about comfort – although of course, that’s important. It is also important to ensure pro-active treatment to prevent further issues down the line.”
John explains that whilst the AFOs themselves were a relatively straightforward orthotic, he made several adjustments to optimise results for Sofia. “We built a made to measure AFO solution from a fairly off the shelf blueprint,” he says, “But I also ensured that the fit extended over the top of the foot, complemented by the shoe wedges we provided to ensure that Sofia’s feet stayed in her splints securely. This is what we call an AFO footwear combination. It is a really important consideration for any ankle foot orthotic. Because, of course, a patient doesn’t just wear an orthotic They wear an orthotic and a shoe. We have to look at the overall solution between orthotic and footwear to ensure both comfort and the right level of therapeutic support.”
Especially for very young children, tolerance is also an important factor in wearing an orthotic, according to John. “If a very young child is uncomfortable in their splint, that will naturally make them reluctant to wear it. That really matters because regular use of the splint is what will ultimately achieve the results that both the child and their family need. Sofia is a brilliant little girl, and mum is very motivated, so all the ingredients are there for her to make enormous progress with the right support. Ensuring that her AFO footwear combination fits comfortably and gives the right support in the right places should make all the difference to her being able to practice her walking and mobility consistently and enjoying life independently.”
Clare confirms that Sofia’s new AFOs have indeed impacted significantly on her freedom and independence as lockdown starts to lift and the family ventures out. “In the past, before Sofia was walking, we used to avoid going on big days out because it was just too difficult. Recently, though, we took her shopping wearing her LOC splints. It was her first time going in a big shop and it was just amazing just to watch her have that freedom to explore without worrying about holding hands or falling over all the time. Sofia also has a 21-month-old sister. It has been wonderful watching them able to run around the garden or the park together!”
Working with LOC and Elaine has been a great experience – they really take the time to look at your child and understand their individual challenges and needs. For parents who are in the same position that we were, I would say do your research – see what clinics are available near you and what the costs are, but my feeling is it’s worth every penny.
After 10 years of daily physiotherapy and swimming, not to mention SDR, hamstring and tendon lengthening, we have finally achieved independent walking – it was a mother’s day gift that would take some beating.
LOC’s video vector technology measures exactly where Austin’s weight is being distributed, how his hips are moving and how his legs are moving. It’s those insights that have made his new AFOs so effective. Even within a few days, LOC’s splints have had more impact on his independence of movement than anything else we have done.
Sofia is currently on the pathway to SDR (selective dorsal rhizotomy) surgery – an operation that aims to reduce rigidity by cutting the relevant nerves in the spinal cord. Whilst the operation can have a dramatic effect, rehabilitation to regain muscle tone can be tough and orthotics are often helpful in supporting this process. Clare has plans to seek LOC’s support again when the time comes. “We definitely plan to stay with LOC for as long as Sofia needs orthotics. They are making a real difference, alongside all of the other therapy that we ensure she receives. I would encourage any family in a similar situation to ours to go and see John (or the closest LOC clinic to you) and get an opinion. Every situation is different, but with LOC you can arm yourself with advice and information so that you can make an informed decision about the best path to follow. There is a cost, yes, but they make sure that you understand how to measure that cost against the possible benefits for your child. Sofia is probably the most determined, independent person I know. If you look at where she was, and where she is now, people have been absolutely blown away, at what she's managed to achieve in a year!”
If you have a child with cerebral palsy who is experiencing mobility issues, LOC can offer advice and guidance as to whether orthotics might be the right course of treatment. Contact us in our Kingston branch or one of our clinics across the UK for an initial consultation.
You can also visit our SDR page for guidance and information on the surgery itself, as well as a number of charities that can potentially support parents with meeting the costs associated with SDR and orthotic rehabilitation.
We have the following facilities and amenities at our Kingston Upon Thames location:
We also have the Gait Laboratory for orthotics patients and Onsite Manufacturing for speedy turnarounds and adjustments whilst you wait.
We have the following facilities and amenities at our Cambridge location:
For more information about The Beechwood Complementary Medical Practice, please visit The Beechwood Practice.
We have the following facilities and amenities at our Bristol location:
For more information, visit Litfield House Medical Centre.
We have the following facilities and amenities at our Romford location:
For more information about The Colin Dove Practice, please visti The Colin Dove Practice
LOC’s clinic is based in the University of Salford’s Podiatry Department and provides treatments for orthotics, scoliosis, pectus deformities, positional plagiocephaly and club foot.
It is also the base for LOC’s northern OSKAR clinic which is run by Sam Walmsley, clinical director of LOC, in conjunction with Elaine Owen MBE MSc SRP MCSP.
Due to COVID-19, we have had to temporarily close the Salford clinic and are operating out of another clinic in Bolton.
508 Blackburn Rd,
For more information, please visit The Good Health Centre
Clothing worn is dependent on which clinic you are attending. You will be sent a letter detailing what clothing to wear along with all other details prior to any appointment at the clinic.