Treatments recommended for some people with cerebral palsy may not be recommended for others, and each person may respond differently.
Treating Cerebral Palsy is Not One Size Fits All
It is also important to consider conditions beyond difficulty with movement, balance, and coordination. Co-occurring conditions, or conditions commonly seen in people who have had an early brain injury, may impact which treatments are considered for a child or adult with cerebral palsy.
These conditions may include problems with vision, learning, behavior, hearing, epilepsy, sensory integration, early or late onset of puberty, intellectual disability and others.
The Cerebral Palsy Treatment Checklist
Ultimately families have to decide what their comfort level is in pursuing any treatment. Whether you pursue a well-established and widely researched treatment, or a newer, experimental, or an “off-label” treatment, these are personal decisions that ultimately are for you to decide.
The following considerations will hopefully empower and encourage you to have more in-depth talks with your family and medical care team:
1. Has the treatment being suggested been studied in people with CP?
The best evidence is based on studies of people of the same age range, diagnosis, GMFCS, and determined from sound, scientific research that is published in peer-reviewed journals.
2. Has the treatment been evaluated on people or just animals?
A treatment that works on animals may or may not work on humans.
3. Is the evidence based on a treatment that is clearly defined?
What does the treatment claim to do, and will this lead to accomplishing the goals you, as an adult with cerebral palsy have, or you and/or your child with cerebral palsy have in mind? What evidence is there to show that the treatment makes a difference for the specific goals the family is trying to accomplish?
4. Has the treatment been tried on a reasonable number of people?
Things that work on one, two, or a handful of people, could have happened by chance, or for unknown reasons that are not going to apply to other people.
5. In the evidence cited, has the treatment group of cerebral palsy patients been compared to a similar group of cerebral palsy patients who did not get the treatment?
How recent is the evidence?
6. Could the evidence about a treatment really just be a “placebo effect?”
A placebo effect is when people say they are better just because they expect to be better and not because of any real effect of the treatment. The placebo effect is not necessarily a bad thing, and it’s quite powerful. It is important to consider if positive outcomes from a treatment are stronger than a placebo effect.
7 . What costs are associated with the treatment and is it affordable?
Give this serious thought, as new treatments, especially those sold on the internet may be very expensive and have hidden costs. Are there other, cheaper or more conventional treatment options that are as effective? Insurance companies are understandably wary of paying for treatments whose benefits are not scientifically substantiated.
8. What is the cost in terms of time?
Consider the amount of time required to participate in the treatment and decide whether your time with your child may be better spent in other ways (play, travel, reading with them, and so on). Some programs may be impractical when one considers the impact on the whole family.
9. What are the goals for a specific person with cerebral palsy?
Are the goals realistic? How will you evaluate these goals? Will you compare the information before and after the treatment? And what is the time frame that you will use to evaluate these goals to determine if the treatment is helpful and worth your time and money?
Keep in mind that no treatment works on 100 percent of people with CP. Question any treatment that claims it is effective for all people with cerebral palsy. Approach new treatments with care and hope, but also with eyes open, aware of what is and is not happening.
If a treatment has a negative impact on the person’s quality of life, you should seriously think about why you wish to continue.
The information from this page appears in our free and downloadable cerebral palsy tool kit.