Cerebral Palsy cannot be cured, but treatment and aids often improve a child's capabilities. Doctors and Health Visitors work with a team of health care professionals to produce care uniquely for your child.
This may include drugs to control fits and muscle spasms, surgery, mobility aids, counseling for emotional and psychological needs and other treatments listed below.
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Splints
If your child's Cerebral Palsy affects their feet, it will probably be necessary for them to wear Splints/Ankle-Foot Orthoses (AFOs). They provide valuable stretching of the muscles. They also help a walking child to obtain a better standing and walking posture.
Children need to be weaned into them, try bringing your hand up at right angles to your arm for just a few minutes and see how much straining you feel. The feeling will be worse than this for a child kept in their splints for too long before the muscle is conditioned to being stretched. It took six months to get Keisha to the stage where she could wear them for most of the day.
They are fitted from a cast taken by the surgical appliance team. There are some very modern varieties around now - with patterns to suit many interests, although what is available varies depending on where you are treated. There is not usually too long a wait between the casting and collecting the finished splints.
Sitting Aid
When a baby/child finds it difficult to sit up a Sitting Aid can be used. They come in a variety of sizes.
Gaiters
Gaiters can be used in exercises and when the child is asleep. They wrap around the leg placed centrally over the knee. The closest thing I can compare them to are the armbands used to take blood pressure, in terms of putting them on. They have rigid inserts, which, when the gaiter is in place, help keep legs straight. They are fastened with Velcro straps. (Keisha finds these very easy to remove!)
We often use the gaiters to have 'quiet time' where we read together. She sits between my legs, both of us with legs stretched out and she forgets she is doing exercises.
Special Footwear
Pedro Boots
Most of the time, Keisha wears her trainers with her splints, but she also has some Pedro boots. These used to be standard hardwearing navy blue, but they now do patented ones which are also sturdy, but look a lot nicer and can go with everything, which is useful for special occasions. (Just because she is disabled doesn't mean she can't dress nicely!)
Plaster Boots
If your child has a tendon stretch/Casting they will need special plaster boots to cover the casts for walking. What you get depends on what your hospital offers. They are rather unsightly but I guess they serve their purpose!
Walking Frames
There are various types of walkers, they are similar to Zimmer frames in appearance. They help children to feel as normal as possible by allowing them to walk about when they want to. Those able to use them can achieve astonishing speeds!
Standing Frames
When you go to the Physiotherapy Department at the hospital, you may see standing frames there. Do not be alarmed, they look much worse than they are. Children can be strapped in around the feet, bottom, waist and chest. It is common to feel that you are torturing your child, but the frame is important in helping to build up the muscles in the legs for standing and stretches. There are many activities that can be done whilst in the frame: drawing at an easel, bubble catching, clapping games etc. Try not to just put your child in the frame with nothing to do as this will increase the risk of them not wanting to be put in it.
Nappies/Incontinence pads
From the age of 3 you are entitled to claim nappies/incontinence pads for your child. Contact your Health Visitor who will arrange this for you. It is worth noting the weight limits of your current nappies so that you receive the correct size. The first batch will usually be a trial, so if they are not what you need just let your Health Visitor know.
Keisha came out of nappies at 4½. I wasn't sure that she would gain control, but with a lot of practice and encouragement she was able to do it. I bought a potty from Argos that converts into a toilet training seat and step up to the toilet. It was very good for her because it had handles so she could lift herself onto it. Now she just uses a training seat.
Bath Chair
If like Keisha you find that your child is frightened having their hair washed or unsteady in the bath, you can contact your Occupational Therapy department if that has not already been arranged. Bath chairs are multi-positioning and have a neck rest and Velcro wrist/leg straps and stand for extra height. Again, it may feel that you are subjecting your child to some kind of torture, but gentle reassurance and encouragement will help in getting your child comfortable enough to enjoy the experience.
Pushchairs
From the age of three you are entitled to a special Major Buggy for disabled children. The style is a lot more modern these days. I've even had people with able bodied children approach me and ask where they can get one!
Rain-covers are not supplied with these pushchairs, they usually have to be purchased separately. You may even have to buy a sun visor on which to attach the rain-cover depending on the make of the pushchair. As your child grows they will be reassessed.
Tricycles
You can apply to the Family Trust Fund for a tricycle from Ability Kids. See sources of help for more information.
Our application to the Family Trust Fund was approved in August 2001. There has been some delay in getting an assessment from Whizz Kidz, as this has happened some eleven months later. It is now a year after our initial application but I'm sure it will be worth the wait. Click here to view Keisha trialling a tricycle. Delivery takes approximately four weeks after the trial.
Physiotherapy
Physiotherapy helps keep the muscles as flexible as they can be. Although Cerebral Palsy is not progressive, i.e. it does not get worse, if physio is not performed regularly, the muscles can stiffen as the bones grow, reducing the range of movement. It is very important to keep up the stretches and exercises you are given, as a child with Cerebral Palsy does not get their muscles stretched as would normally be achievable in every day activity. It is equally important not to overdo it. Take a lead from your child.
The severity of CP influences how much and what type of physiotherapy will be necessary. Keisha has physio once a week. Once a month it is carried out at the hospital and for the rest of the month, her therapist treats her at nursery. A team will usually only make visits if you live in their borough. Because Keisha was born in St George's Hospital, Tooting, we had to transfer her care to St Helier, since we came under Merton, even though St George's was nearest, so be prepared to do this if necessary.
Speech Therapy
Speech can be affected in varying degrees. Your child may or may not require speech therapy. If you have any concerns, contact your Health Visitor (HV) who will arrange for an assessment visit. Even if your child has problems pronouncing certain sounds, if they can generally be understood, they may not be recommended for Speech Therapy. The general view is that they do not want to make a child feel unnecessarily self conscious and it may also correct itself.
If your child cannot speak at all, it may be possible for you to get help with computerised equipment.
Orthopaedists
An orthopaedist is a surgeon your child could be referred to to predict, diagnose, or treat muscular problems linked to cerebral palsy. They specialise in treating the bones, muscles, tendons, and other parts of the skeleton.
Occupational Therapy
Occupational Therapists assess your home and talk to you generally about any practical difficulties you encounter when caring for your child in your home and trying to lead as normal a life as possible. They may recommend adaptations to your home, installing a downstairs bathroom for example, although you may have to wait some time. Certain adaptations will only be done after your child reaches a certain age.
Social Worker
Social Workers can help patients and their families to find assistance in the community and educational programmes. If you feel you may need a Social Worker, contact your Health Visitor, services very around the country.
MRI Scan
Some time after diagnosis, the Neurologist will probably want to do a Magnetic Resonance Imaging Scan (MRI), which can sometimes help to identify the cause of Cerebral Palsy. Your child will be put to sleep which may be distressing for you to watch, so you may want to wait outside. In a small child the anaesthetic is given via the throat so cannot be given if your child has a cough. Ring the hospital for advice if your child has a cold around the time of your appointment.
Botox
Botox is a very diluted form of the Botulism Toxin. It is injected into the appropriate stiff muscles and can have a relaxing effect on the muscles for about 3 to 6 months, although this can vary and it is important to maintain stretches and exercise after treatment. Physiotherapy can often be more effective in helping to building muscle strength and coordination after injections. The long term side effects are as yet unknown.
Click here to read how Botox has helped Keisha - I was very wary at first, but having seen the effects I am glad she had it done.