MOTOR ACCIDENTS AUTHORITY

This book is a joint effort of: MOTOR ACCIDENTS AUTHORITY by Gitta Angeli n a

: 4 A guide for families of children and adolescents with a brain injury MOTOR ACCIDENTS AUTHORITY This project was made possible t h rough help and encoura g e m e n t g i ven by many people, including s t a ff of the Brain In j u r y Re h a b ilitation teams at Syd n e y C h il d re n s Hospital, Randwick and The Chil d re n s Hospital at We s t m e a d. Pa rents and carers of chil d ren wit h b rain injury were invo l ved from the e a r liest stages and contributed during the deve l o p m e n t p rocess. Chil d ren from local schools and hospitals have ill u s t rated the booklets and fa m ilies have prov i d e d personal stories. In formation in these booklets is based on the t e a m s experience, lit e ra t u re published by other o rganisations, and conversations with fa m ilies and c h il d ren with brain injury. It is intended as a guide, and fa m ilies should seek pro fessional advice as needed. Please note that some of the info r m a t i o n p rovided may become outdated over time. Review of the booklets is planned in 2002. The information for these booklets was edited by Dr Adam Sc h e i n b e rg (Paediatric Re h a b ilitation Specialist), Donna Carmichael (Co-ordinator at the Sydney Chil d re n s Hospit a l, Randwick), and Lynn McCartney (Clinical Nurse Consultant at The Chil d re n s Hospital at Westmead). The booklets were funded by a grant from the Motor Accidents Au t h o r ity. Brain Injury Re h a b ilitation Pro g ra m Sydney Chil d re n s Hospital, Randwick The Brain Injury Re h a b ilitation Se r v i c e The Chil d re n s Hospital at Westmead Phone: (02) 9382 1590 Phone: (02) 9845 2132 F o llowing an injury or illness, yo u r c h ild would have been admitt e d to the Emergency Department. M a ny tests may have been done to help determine what treatment wa s re q u i red. It may also have been necessary for your child to go to the Paediatric In t e n s i ve Care Unit (PICU). In this section, we describe some of the pro c e d u res and tests that happen in the PICU, who is invo l ved and how c h il d ren re c over during this time. Pa rents often ask, how long will it be b e fo re their child has re c ove red. In the early stages, we often can t give a cc u rate information about this, as t h e re are many diffe rent factors which influence re c ove r y. In nearly all cases h o w e ve r, chil d ren with a brain injury i m p rove with time. What are the common treatments seen in the Intensive Care Unit? During this time your child may be unconscious and sedated. They may be attached to specialised equipment that monitors heart rate, blood p re s s u re and tempera t u re. Other treatments you may see include: if your child is not able to breathe safe l y, it will be necessary for a machine to bre a t h e for them. When your child is alert enough to breathe, the ve n t ilation and sedation will slowly be reduced and the breathing tube re m oved. In certain situations, it may be necessary to perform a tra c h e o s t o my to help a child b reathe without the ve n t il a t o r. At a later stage, the tube is re m oved and the child is able to breathe n o r m a lly again. in the acute phase fo llowing brain injury, the brain can become swollen. To re li e ve pre s s u re on the brain, the neuro s u rgeon will decide if a pre s s u re monitor and/or ventricular drain is re q u i red. The tube would normally be re m oved prior to discharge from the intensive care to the wa rd. some chil d re n w ill be unable to eat or drink n o r m a lly and may re q u i re a drip (IV cannula) into their vein to d e li ver fluids and medications. This is connected to a pump to m a ke sure the fluids are given at the correct rate. - this tube goes from your chil d s nose or mouth into the stomach. In it i a lly it is used to keep their stomach empty and pre vent vo m iting. Later it can be used to g i ve nutrition. Your child can still eat and drink with the nasogastric tube in place and when they are 1 Brain Injury Rehabilitation Program, Sydney Children s Hospital, SESAHS and Brain Injury Rehabilitation Service, The Children s Hospital at Westmead. (2001)

2 eating enough, the tube is simply re m ove d. init i a lly a catheter into the bladder may be needed to help measure your c h il d s urine vo l u m e s. Who looks after your child in the PICU? A number of health pro fessionals will be invo l ved in the care of your chil d in the intensive care and it may be u s e ful for you to know what their roles are, so that they can answer your questions. You have the right to information, as soon as possible and repeated as often as you need in order to understand what is happening to your chil d. : are responsible for your chil d s d ay- t o - d ay care while they are in PICU. They monitor your chil d s b reathing, nutrition, fluids and medications as well as their ove ra ll re c ove r y. : this is a specialist s u rgeon trained to care for a va r i e ty of brain and spine pro b l e m s that may re q u i re surg e r y. The n e u ro s u rgical re g i s t rar is the assistant to the neuro s u rgeon. You m ay find that your initial contact is w ith the re g i s t ra r, so ask them to explain what is happening when you feel that you need to. a re ava ilable to talk to should you have any questions about the nursing care your child is receiving. The nurse caring for your child each shift is the best person to speak with to explain how your child is doing and what p ro c e d u res may be taking place. if your child has other injuries such as abdominal t rauma, a general surgeon will be i nvo l ved. An orthopaedic surgeon would be invo l ved if your child has a ny bro ken bones. What tests may be performed in the early stages? When your child is in hospital, some of the specialised tests that may be carried out include: This is a specialised X- ray that g i ves better images of the brain than normal X- ray and helps doctors to work out if there is bleeding, or swelling of the brain. This scan of the brain can give views of areas that cannot be seen on other scans. It is not normally used unless more information, than is provided by the CAT scan, is needed. An EEG shows the electrical a c t i v ity in the brain. Small external re c o rders are placed on the head and these make tracings of the b ra i n s activities. It can give i n formation about whether fits ( s e i z u res) are occurring or not. A lthough these tests are ve r y important for trying to find how seve re a chil d s brain injury is, they are only a guide, and can t give specif i c i n formation about whether there will be long-term problems. How long will your child need to stay in the PICU? The intensive care specialist, wit h the other specialists invo l ved, will decide when it is safe for your child to be tra n s fe r red to the wa rd. This is u s u a lly after they no longer re q u i re ve n t ilation, and are medically stable. It is often at this time that the Re h a b ilitation team will become more i nvo l ved in the care of your chil d. You can ask to go with your child when they have tests such as a CAT scan. Ask nursing staff about this. Fa m ily and friends can visit in the PICU but visitors need to be limited to 2 at a time. Immediate fa m ily can visit at any time, however t h e re are set visiting times for friends during the day. Bring fa m iliar things in from home for your child, rather than buying new toys. Your child is more li kely to be comforted by fa m iliar t h i n g s. D o n t talk about your child over the bed. Even though they may seem to be asleep or sedated, they may in fact be able to hear and understand part of the c o nve r s a t i o n. E ven though your child may not respond at this stage, continue to talk to and comfort them. Ask the social worker about a ccommodation options, meal t i c kets, and tra n s p o r t. 3

4 I n this section, we describe the causes, classification, and effe c t s of brain injury. We also describe how we measure the severity of an injury. The most common causes of brain injury in Australia are: Motor vehicle and bike acc i d e n t s Fa ll s Sporting injuries M e n i n g it i s / e n c e p h a litis (infections a round the bra i n ) C e re b rovascular accidents (stro ke ) H y p oxia (lack of ox ygen to the b rain) from near- d rowning a ccidents, cardiac (heart) causes and prolonged fit s Most of the information in this booklet relates to chil d ren who have had a b rain injury fo llowing trauma. There m ay be simil a r ities with chil d ren who h ave had a brain injury from another cause such as stro ke or infe c t i o n. Discuss the diffe rences for your chil d w ith the team. What are the different classifications of brain injury? Brain injury can be classified as. u s u a lly occurs fo llowing a direct blow to the head, causing a skull fra c t u re. T h e re is often bruising to the brain underlying the fra c t u re. is often a re s u lt of motor vehicle accidents or fa lls w h e re there has been shaking of the brain. This re s u lts in damage to the connections between nerve c e lls, termed. The damage is more widespread than in focal injury, and there fo re t h e re may be more pro b l e m s. What are some of the effects of brain injury? T h e re may be changes affe c t i n g p hysical function, cognition (thinking) and communication. The short-term effects include (being unconscious) or, (being confused and drowsy). The period of time your child stays in a coma is related to the seve r ity of the initial injury. In the longer term, p hysical problems include weakness, poor balance or co-ordination, and fatigue. Cognit i ve effects can include reduced attention and concentra t i o n, difficulty with planning and organisation, changes to behav i o u r, and changes in communication such as expre s s i o n and understanding what is said. All these areas are discussed in later booklets. It is important to note that most problems improve with time and the Re h a b ilitation team will be working with you and your child to maximise their re c ove r y. How do we measure the severity of traumatic brain i n j u r y? Pa rents often want to know what the fu t u re holds for their child after i n j u r y. It takes time to tell how serious your chil d s injury is, and what long term effects there may be. The most re liable way to assess the severity of the initial injury is to measure the amount of time your child re m a i n s c o n fused, disoriented and has poor d ay- t o - d ay memory. This state is termed and is discussed in more detail later in this booklet. Other factors that the team can use to judge seve r ity of injury include the, and length of coma. The GCS score is used to assess the level of coma by checking how well your child can respond to commands. Coma is when the brain is not functioning at it s normal level, as the part of the bra i n responsible for keeping us awa re of what goes on around us, is affe c t e d. During this time your child may have d iff i c u lty communicating or re s p o n d i n g to light, sound and touch. How long will my child take to get better? G e tting better after brain injury happens at a diffe rent rate for eve r y c h ild but usually continues for a long period of time. Re c overy is often most rapid in the early stages. W h e reas an adult has reached a leve l of maturity where they know how to p e r form the tasks needed for daily life and work, for many chil d ren, these tasks are yet to be learnt. Brain injury can affect the ability to learn these new skills. The Re h a b ilitation team will help you and your child to re l e a r n s k ills which have been lost, and to a cc o m p lish skills which need to be learnt over time. 5

6 T he brain is part of the centra l n e r vous system, which includes the brain, the brain stem, the c e re b e llum and the spinal cord. The b rain is made up of nerves, which are c e lls that send and re c e i ve electrical impulses, to and from the body. The brain is divided into halves, call e d h e m i s p h e res. There is a right and left h e m i s p h e re and each hemisphere c o n t rols the opposite side of the b o d y s movement. The hemispheres are further divided into lobes, which are parts of the b rain that serve specific purposes. These include the frontal lobes, parietal lobes, temporal lobes, and o cc i p ital lobes. In focal brain injury, just one lobe in one hemisphere may be affected. In diffuse injury, seve ra l or all lobes of both hemispheres may be affe c t e d. What are the effects of injury to the different lobes? the frontal lobes c o n t rol most complex functions, which are re fe r red to as exe c u t i ve fu n c t i o n s. These include planning, c o n t rol of impulses, init i a t i o n, a ttention and emotion. The back of the frontal lobe also contro l s m ovement of the opposite side of the body. Damage to the frontal lobes may cause changes in behav i o u r. This can be one of the most upsetting aspects of brain injury for parents. Ways of managing these changes are discussed in later booklets. the parietal lobes p rovide sensory information about the body such as touch, pain and t e m p e ra t u re. Injury can re s u lt in abnormal sensations. Chil d ren wit h weakness on one side of their body m ay have a lack of awa reness of that side. Damage to the parietal lobes can also a ffect spatial orientation, which is how c h il d ren orientate themselves in space. This may re s u lt in diff i c u lties wit h p roducing pictures and models. the functions of the temporal lobes include hearing, memory and learning. Damage may cause diff i c u lties with organising what to say and using the correct word. It m ay also re s u lt in loss of short- t e r m m e m o r y. This may have an effect in s ituations such as school, where memory is important in learning new i n formation. the occ i p ital lobes help us understand what we see. They i n t e r p ret the color, shape and distance of the object the person is looking at. Damage to the occ i p ital lobes may re s u lt in a distortion of what the person can see. Some chil d ren m ay have diff i c u lty recognising or interpreting fa m iliar objects. the brain stem connects the brain to the spinal cord and sits beneath the brain. Nerves to the face, including those to the muscles for swa llowing, arise here and if damaged, may interfe re wit h sensation to the face and mouth, s wa llowing and coughing. the cere b e ll u m c o n t rols the co-ordination of m ovement for the body. It is fo u n d t o wa rds the back of the brain. Damage to the cere b e llum may re s u lt in a lack of coordination such as being wobbly when walking, clumsy when using hands or slurred speech. Ask your doctor to show you your c h il d s brain scans, or to d e m o n s t rate on a plastic model, the diffe rent parts of the bra i n. 7

8 T he length of time it takes fo r your child to improve will diffe r in each case. How long this re c overy will take, is probably the h a rdest question for the doctors to a n s w e r, especially in the early stages. Re c overy is usually most rapid in the early weeks and months. An unconscious child ra rely wa kes up a ll at once, as may be suggested on TV or movies. Ra t h e r, chil d re n u s u a lly re c over gra d u a ll y. Below is a stepwise description of the way chil d ren often re c over fro m s i g n ificant brain injuries. It is based on a scale called the Ranchos Los Amigos scale, named after the place w h e re it was devised. When chil d re n re c over from brain injury, they may go through some or all of the stages. Stage 1: NO RESPONSE (Earliest stage) The child appears to be in a deep sleep and doesn t respond to sounds or stimulation. This may be re fe r red to as coma. In a coma, the brain is not functioning at its normal level. During this time there is a li m ited a b ility to take in information or respond to light, sound and touch. Stage 2: GENERALISED RESPONSE As the chil d s injured brain re c overs, they will begin to react to loud noises or painful sensations by making noise or m oving arms and legs. This response may not happen fre q u e n tly and they may still appear to be asleep for much of the time. Stage 3: LOCALISED RESPONSE The child may respond by m oving away from uncomfortable p ro c e d u res such as needles. They may also turn towa rds sound or try to watch people in the room. They may respond to a simple instruction such as close your eye s. Stage 4: CONFUSED AGITATED C h il d re n s behaviour is variable during this stage. They may be i n a c t i ve or re s tless, loud or even a g itated. They are not in control of this behav i o u r. They may be confused and try to wa n d e r. However they may not know where they are going and need more supervision. The chil d s attention span is short, and they may fo rget things that h ave happened to them. A lthough they are more awa re of what is going on, they can t m a ke sense of it all. While this b e h aviour is distressing for p a rents, it does show that the c h il d s condition is improv i n g. Stage 5: CONFUSED INAPPROPRIATE C h il d ren are usually calmer at this stage and able to do simple tasks for themselves, such as finger fe e d i n g. They may become agitated if they are over stimulated, or a s ked to do something they are unable to do. They will start to talk more clearly, but what they say may seem i n a p p ro p r i a t e. Stage 6: CONFUSED APPROPRIATE C h il d ren may still be confused during this stage but start to b e h ave more appro p r i a t e l y. They will start to show that they remember simple day- t o - d ay things such as the names of staff. They may be able to work at tasks in thera py sessions for longer periods. Stage 7: AUTOMATIC APPROPRIATE The child is able to do normal a c t i v ities with only a little help. They may be able to learn things but it may be slower and harder than befo re. The child tires quickly. Stage 8: PURPOSEFUL APPROPRIATE The child is able to re c a ll past i n formation and recent events, and b e tter understand what happened to them. They may be upset about what has happened. The child may have changes in their thinking, concentration, memory and social skills compared to befo re the acc i d e n t. 9

10 W hen a child is waking up after coma, the steps of re c overy are often combined and re fe r red to as post- t ra u m a t i c amnesia (PTA). This is when they a re unable to remember day- t o - d ay e vents that have occ u r red, such as who came to visit them. They usuall y can remember up to the time of injury, but have problems remembering what happened afterwa rds. Chil d ren in PTA a re often confused and disorientated, which means they may not know where they are, or what time of day it is. It is important to know that the length of PTA can be hours, days, weeks or months. We use the length of PTA to help predict if a child will have long term changes after their injury. Most chil d ren come out of PTA, eve n in the most seve re cases. It is not u n t il your child is out of PTA that further assessments can be done to see what specific changes may h ave occ u r re d. 11 It is important that while your child is in PTA, they are in an env i ro n m e n t w h e re they don t become ove r stimulated. They may not be able to cope with too much noise, or activity. It may be necessary to li m it the number of people who come in to visit to one or two at a time. If they are at risk of climbing out of bed and hurting t h e m s e l ves, it may also be necessary to put their matt ress on the floor. The posit i ve aspect of PTA is that the c h ild will usually not remember much of what has happened to them during this time. Little pockets of memory m ay surface, but most of this time w ill not be re m e m b e re d. C h il d ren may re c over in a stepwise fashion li ke in the Los Ranchos scale. However they may skip l e vels, have signs from more than one level at a time, or stop at a level in their re c ove r y. You will be able to get information about ways to look after your child at each level from the team.