Cerebral Palsy. 1 - Introduction. An informative Booklet for families in the Children and Teens program

Transcription

1 Cerebral Palsy 1 - Introduction An informative Booklet for families in the Children and Teens program Centre de réadaptation Estrie, 2008

2 Preface Dear parents, It is with great pleasure that we present the Information Guide on Cerebral Palsy. It was designed by the team members of the cerebral palsy unit at the Centre de réadaptation Estrie (CRE) to answer questions, provide advice and give support to families of a child with cerebral palsy. It focuses mainly on the period from birth to age three. The guide is divided into 14 informative booklets: Booklet 1 Booklet 2 Booklet 3 Booklet 4 Booklet 5 Booklet 6 Booklet 7 Booklet 8 Booklet 9 Booklet 10 Booklet 11 Booklet 12 Booklet 13 Booklet 14 Introduction (information about cerebral palsy) Local support Basic principles Movements and motor skills Communication Mealtimes Getting dressed Hygiene Games, toys and pastimes Self-esteem Family life At home At daycare Resources A guide for you to act right now! You are the closest to your child s situation, and this new situation may make you feel helpless. With the publication of this guide, we hope you will be better equipped and informed about what cerebral palsy is, and you will therefore have a better understanding of cerebral palsy and its effects on you and your family. page 2 Although much emphasis has been placed on the general and universal character of the selected activities, we cannot exclude the possibility that certain activities are not appropriate for your child. We invite you to check with your doctor or your rehabilitation team should you have any doubts related to certain contraindications that may be specific to the condition of your child.

3 Remember, this guide is a tool, but it cannot replace therapy. Think first and foremost of having fun with your child. The real goal is to spend quality time with your child stimulating him, which in turn will be beneficial to him! We wish to thank all the practitioners who participated in the development of this guide, particularly: Chantal Camden (physiotherapist), Dominique Verdo (education specialist) and Kathleen Fournier (social worker). Special thanks to Mélanie Thibault (ergotherapist) for the beautiful illustrations. Finally, many thanks to Marie-Josée Fortier, mother of a child with cerebral palsy, who gave us the idea of writing information booklets for parents. We hope this booklet will be helpful, The editorial team page 3

4 page 4 What is Cerebral palsy?* Cerebral palsy is not a disease but a disability Cerebral palsy is characterized mainly by problems with muscle tone that generate motor difficulties, in other words, a disability related to control, execution and coordination of voluntary body movements. There may also be consequences related to posture. Cerebral palsy results from brain damage that occurs in the child during pregnancy, at birth or when the child is very young (up to two or three years old). These lesions or brain damage interfere with the transmission of messages from the brain to the body and also messages from the body to the brain. Brain damage, once present, remains stable. The damaged brain cells cannot be repaired, but those that have not been affected continue to evolve. About 2 out of every 1,000 children are born with this condition, which means that there are some 160 new children born with cerebral palsy per year in Quebec. What causes cerebral palsy? In the majority of cases, it is a set of events and factors brought about either by difficulties during pregnancy (e.g.rubella, diabetes), at birth (e.g.: prematurity, difficulties during labor) or in the first years of infancy (e.g.: meningitis, head trauma). It is difficult to identify precisely what the underlying causes of cerebral palsy are in a child because there are many. We often associate cerebral palsy with pregnancy, but sometimes the pregnancy and childbirth are trouble- free, and no cause seems to explain the paralysis. *- Some information in this booklet is from the leaflet Déficience motrice cérébrale, document pour les parents (Lajeunesse Ghislaine et al. Centre Cardinal- Villeneuve, 2005, 20 p.),

5 Characteristics of cerebral palsy When speaking of cerebral palsy, it basically refers to muscle tone. Muscle tone is defined by the normal tension of a muscle. Thus, what determines the characteristics of your affected child is based on the state of his muscle tone. Cerebral palsy may be qualified as mild, moderate or severe. Depending on the nature, the extent and the area of the damage to the brain, the disorders may vary from one child to another. We therefore distinguish four types of cerebral palsy. The four types of cerebral palsy Spastic This is the most common type. The movements are slow, tense and rigid because of too much tension in certain muscles. The muscle tone is higher than normal, which is also called hypertonia. This problem is also named according to the area of the body that is afflicted. 8 Diplegia Mainly the two legs are affected, although to a les ser degree, the arms may also be affected; 8 Quadriplegia Mainly the arms and legs are affected; 8 Hemiplegia The arm and leg on one side of the body are affected. Dyskinesia and / or dystonic The movements are involuntary and uncontrolled. The tone fluctuates between hypertonic (high) and hypotonic (low). Primitive reflexes can be observed. Ataxic The movements are clumsy, uncoordinated and lack assurance. The balance is often precarious. page 5

6 Mixed Some children may also have a combination type of cerebral palsy. For example, a child may present spastic and ataxic type disorders at the same time. Related Problems Due to the generally diffuse brain damage, the following difficulties may also be present, although to varying degrees: 8 speech problems (articulation disorder, low voice, etc..) 8 language problems (difficulty in understanding, delay in acquiring new vocabulary, delay in creating sentences, etc..) 8 vision problems 8 hearing problems 8 intellectual problems (attentiveness, concentration, learning disabilities, mental retardation, etc..) 8 perception disorders (problems related to the learning of concepts or academic prerequisite concepts such as shapes, color, etc..) 8 problems in analyzing the information received by the brain through the different senses 8 swallowing problems (suction difficulty, chewing difficulty, difficulty swallowing, a tendency to choke, etc..) 8 digestive problems (constipation, reflux) 8 behavioral problems (irritability, sleep disruptions, increased fatigue) 8 epilepsy. page 6

7 Motor development and cerebral palsy Children with cerebral palsy acquire the majority of motor skills between birth and age six. To continue to develop physically, cognitively and socially, your child can have access to compensatory devices, adaptations, medical interventions and rehabilitation. Here are two examples: 8 To preserve your child s energy and thus promote his opportunities for academic learning, his mode of transportation could be reviewed and changed. 8 In order that your child be understood more easily (e.g.: by his classmates or when he has trouble articulating), a communication board could be used. The lesions in the brain that are responsible for the paralysis are stable. However, when a young child reaches adolescence, changes in muscles and joints caused by spasticity and growth can cause a deterioration of the motor capacities. Personal Notes page 7

8 w w w. c e n t r e d e r e a d a p t a t i o n e s t r i e. o r g Centre de réadaptation Estrie 300, King Est, Suite 200 Sherbrooke (Québec) J1G 1B1 T : F :