As you look for ways to take care of your child, you may come across dozens of options for therapies, treatments and rehabilitative methods. This could include physiotherapy, behavioural therapy, occupational therapy, psychological treatments, conductive education, treatments for feeding and drooling problems, medications, injections, surgery and more.
It can be difficult to sift through all the options available while simultaneously attending to your child’s immediate care needs. Not least because getting your child on a treatment programme means first arranging several assessments with a number of specialist medical professionals, to ensure your child’s needs are properly being met.
My role as a case manager is to help make these arrangements for you. I liaise directly with the wide range of specialists that need to be involved in your child’s case, essentially being the go-between for yourself and the medical professionals involved. Typically, parents will be able to access a case manager as a result of legal proceedings for medical negligence, but it is possible (albeit costly) to find one independently.
What is encouraging is that cerebral palsy is one field of research that scientists are constantly exploring. Although no cure has been found yet, scientists continue to experiment with and develop new, innovative methods of treatment and therapy. The following is a short exploration of a few such options open to children with cerebral palsy:
Hydrotherapy is a form of physiotherapy that involves taking the child into a warm water environment such as a pool or large bath. The buoyancy of the water helps relieve any pressure on their muscles and joints, allowing them to move more freely than they would otherwise. While in the water, a physiotherapist will take the child through some exercises designed to help improve muscle tone and strength, while increasing circulation, fitness, flexibility, mobility, balance and coordination.
Magic Carpet is an interactive projection system that helps stimulate children to play, learn and explore the various environments being projected. It is usually recommended by an occupational therapist to provide a sensory experience and stimulation for your child. Children can move around the large projection space, interact with the various elements and watch the projection change in real time. The Magic Carpet responds to the slightest touch and movement – including gesture and eye gaze – making it accessible to children with a wide range of mobility impairments. The system is controlled through a smartphone or tablet app and is the only NHS-approved interactive floor projection system, featured on the NHS framework for sensory equipment. It can be installed in a school or even in your home and is a great way for children with cerebral palsy to play alongside their siblings and peers.
The ketogenic diet
The ketogenic diet is a highly specialised medical treatment. It’s a low carbohydrate, high fat, controlled protein diet that needs to be undertaken under the guidance of a dietician with specific experience in administering ketogenic diets. Instead of the body breaking down carbohydrates for energy (thus producing glucose), the ketogenic diet causes the body to break down fats for energy (producing ketones). When the body uses ketones instead of glucose for its energy source, it can lead to a reduction in seizure frequency for children with cerebral palsy and epilepsy.
Speech and language therapy
Cerebral palsy can mean the parts of the brain that control speech and the muscles that allow us to speak are affected. Speech and language therapy can be beneficial to help reduce issues with speech, as well as any related problems such as difficulty swallowing or eating. It’ll need to be administered under the guidance of a specialised speech pathologist who is qualified to diagnose and treat swallowing, voice, language and speech disorders. The therapist will take the child through exercises to practice their speech or teach the child alternative methods of communication.
Arranging independent care for your child
While having a case manager to arrange therapies, treatments and rehabilitation for your child can make things significantly more straightforward, there are ways you can get your child on the right waiting lists and seen by the right specialists without a case manager’s help.
The first thing I would recommend you do is to speak to your GP about what you’d like to happen for your child. Once they’ve assessed your child, they can contact Social Services to start the process of arranging basic services, including referrals to physiotherapists and any other services they feel your child might need. Your local Social Services team is legally responsible for ensuring this happens. Try to develop a good relationship with your social worker so you can work in tandem with them.
Another important relationship to maintain is with your child’s school. Build an open and honest relationship with the staff so they are fully aware of your child’s needs, and feel they can report anything concerning back to you immediately. You might also find it easier to arrange some of your child’s therapies and treatments through the school rather than fully independently. Having open lines of communication between you and your child’s school makes it easier to request things like sitting in on your child’s classes or observing them in the playground, should you wish to do so. Working closely with the school also means you can have a more accurate and detailed Education and Health Care plan to help your child access statutory professional support.
Involving the family in your child’s wellbeing
It is my view that any treatment regime, therapy sessions or rehabilitative care you arrange for your child should ideally be done with the rest of your family in mind. If your child has siblings, for example, try to find ways to involve them in the process and adapt treatments so the whole family can participate.
On a practical note, this means you won’t need to arrange childcare for your other children during the therapy or treatment appointments. On a brighter note, spending time with their family will be hugely beneficial for your child, helping develop strong bonds with their siblings and turning it into a family day out rather than a solitary activity for them alone. This will also help normalise your child’s every-day life in the eyes of their siblings too, which will also reflect positively on your family’s dynamics. By coming together as a family, you can take your child through the challenges of cerebral palsy with greater ease.
By Goksel Guner, Case Manager for children with cerebral palsy