The doctor Ksenia Kovalenok — about why children with cerebral palsy require special treatment approach
Photo: from personal archive Ksenia Kovalenok
Unfortunately, patients with cerebral palsy becomes more and more. But at the same time increasing the number of rehabilitation centers, both private and public. And, oddly enough, this creates a certain problem.
Cerebral palsy has many different forms. In children with mild forms may be slightly different gait, children with severe disabilities can not walk at all and even speak. But no form of cerebral palsy can not be cured. For doctors – it is an axiom, but for parents of a child with this diagnosis – not always. They rush to find cures to heal your child. The demand is known, creates supply: there is a huge number of unscrupulous rehabilitation centers, where they promise to cure what cannot be cured, use of questionable techniques, are debilitating for the child of infinite physical exercises. As a result, parents are left in these centres a lot of money, and children, at best, no benefit, and sometimes even start to feel worse.
Why is this happening and how this problem should be solved?
It is essential to determine what rehabilitation courses, operations, technical support needs child. And it has doctor, not his mother, as so often happens. To observe children with cerebral palsy needs a neurologist at the district hospital, but unfortunately, most of these professionals are not trained in methods of working with children with cerebral palsy. Therefore, as a rule, the family doctor, who would watch the child constantly, usually not. However, for example, in Tyumen has already gained successful experience in organization of such monitoring at the regional level, but while this is a drop in the ocean.
In addition, for parents of seriously ill children there is no special and psychological support to cope with stress after their child was diagnosed. We know the stage of adoption is inevitable: denial, anger, bargaining, depression, and acceptance. And parents, especially mothers, of children with cerebral palsy can stay at the very first stage for many years. They do not want to accept the fact that their child will always be limited. All efforts aimed at finding methods of healing.
Sometimes mom doesn’t have absolutely no other goals and interests in life — if only the child got to his feet. And on his feet he might not Wake up from ever. In this state, the mother completely goes in an endless search for experts, centers that can heal the child, often it ceases to care of the husband, other children. As a result, the family begins to crumble, and she herself have serious psychological problems.
Suffering and the child with cerebral palsy, he receives “help”, which is sometimes chosen inappropriately. For example, the mother would have been hard for several hours to train in the fitness centre. But she sends the child to the “experts” who, for four hours a day doing physical therapy with a screaming and crying child who only wants to be left alone. Resources of body and mind is not infinite. This “intensive rehabilitation” often causes a rollback in mental development and socialization. But in the pursuit of success moms rush from one rehabilitation centre to another, changing doctors to try anything new and questionable methods. And then replace this activity comes apathy because it’s a heavy psychological blow — to do “everything possible” and not get the desired result.
We must not forget that medicine is a science. It should be evidence-based. Let the testing of new methods is being conducted by research institutions. Otherwise it turns into experiments on children for which the parents can send the money and not see results. I’m not saying to be afraid of everything new. After all, in the Arsenal of the physiologist must be a sufficient set of techniques to achieve the goals set by the physiotherapist. But only those techniques that have proven effective.
Well, if parents can choose for their child, one rehabilitation center and one attending physician. How to do it? No need to listen to “experts” who say “For 20 days no improvement has occurred, but walk another year and your child will be absolutely healthy.” No need to go where they promise dramatic improvements, especially for full healing from cerebral palsy.
Special attention should be paid to goal setting. The specialist should set a goal, and not abstract (to improve the overall physical condition of the child, “to pump up” muscles”), and specific: to teach the child to independently transfer from bed to chair and back, hold a spoon, etc. the First question to be answered: what specific skill you need to teach the child to better adapt to everyday life? And depending on this is to put a task on which to work during the course. Moreover, after the course, this work must continue at home.
Ideally, helping children with cerebral palsy should be organized at the state level. It should be based around doctor who knows the child and understands, in what terms and to what extent he needs to recover; if he needed surgery, and if so, what; what resources the technical support he will need and so on. Rehabilitation centers must be built into the system and not to test the child of dubious methods, and to help him in the acquisition of new skills to achieve specific social objectives.
The author is chief physician of the rehabilitation Centre for children with cerebral palsy