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Response to

The National Council for Special Education

Proposed New Model of Special Needs

Allocations Within Schools

September 2014

Epilepsy Ireland 249 Crumlin Road

Dublin 12 T: 01-4557500

info@epilepsy.ie www.epilepsy.ie

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Contents

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1. Introduction 3 1.1 Epilepsy is More Than Seizures 3 1.2 Epilepsy and Learning – An Overview 3 1.3 The Impact of Epilepsy 4 2. Epilepsy and Educational Difficulties 5 2.1 Underachievement and Specific Learning Difficulties 7 2.2 Socio-emotional & Behavioural concerns for Children with Epilepsy 7 3. Summary 9 3.1 Recommendations 9 3.2 Contact Details 10 3.3 References 11 Appendix 1

A Brief Note on Epilepsy, Seizures and Treatment Appendix 2

Seizure focus and Potential Effects on Learning Fig 1. The Lobes of the Brain Chart: Seizure focus and possible specific deficits Appendix 3 Parent accounts of experiences of children with epilepsy in school

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1. Introduction

Epilepsy Ireland welcomes the National Council for Special Education’s proposed new model of special needs allocations within Irish schools. Under the existing model it has been difficult for children with epilepsy to access supports allocated on the basis of diagnostic categories. Epilepsy Ireland is hopeful that the move to a needs based model could be a positive development for children with epilepsy. Although epilepsy is recognised as a care need in schools, it is important also to highlight the considerable educational implications associated with epilepsy. 1.1 Epilepsy is more than seizures Epilepsy is characterised by seizures which originate in the brain but epilepsy is more complex than having seizures alone. A significant minority of people with epilepsy have seizures which are difficult to control. Even for those with more treatable epilepsy wider difficulties often persist beyond the having of seizures. Studies show that educational deficits persist irrespective of seizure control, (Berg et al 2007). Epilepsy is complex in this regard and it touches every aspect of life. Children who have, or who previously have had, a diagnosis of an epilepsy syndrome constitute a vulnerable group. While for some, the difficulties they experience may fall within categorical diagnostic criteria used to allocate resources in school setting, for many this may not be the case. There is a growing awareness of the specific clusters of difficulties from a psycho-educational perspective and such difficulties are also experienced in those with resolved epilepsy. Key areas of difficulty include visual processing difficulties, speech and language difficulties, motor difficulties and aspects of executive functioning (Kernan et al., 2012; Parkinson, 2002; Randó et al., 2004, 2005; Rejnö-Habte Selassie, Viggadal, Olsson, & Jennische, 2008; Wodrich & Cunningham, 2007). Further difficulties are noted with attention, behavioural difficulties and learning difficulties. Awareness of these potential ongoing difficulties among children with resolved epilepsy is critical among the education sector, in terms of provision and intervention. 1.2 Epilepsy and learning In the education context epilepsy has been seen mainly as a medical condition, or care- need requiring a response around seizure management, more than a learning related issue. Yet, as will be seen from this submission numerous studies show children with epilepsy having marked difficulties in respect of learning, attainment, visual processing difficulties, motor difficulties, executive functioning, and being at increased risk of co-morbidities, mental health, behavioural and emotional difficulties. It has long been the experience of parents and of clinicians and professionals working in epilepsy care in Ireland, as communicated to us, that epilepsy has a significant impact on learning outcomes for a range of reasons, the nature of epilepsy itself as a brain related condition, the effects of seizures, medication effects and psychosocial impact. Key professionals have expressed concern that the needs of children with epilepsy were not always reflected within the existing model of provision and that they were advocating for children who ultimately didn’t benefit.

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Instead, it has been necessary to identify and emphasise other areas of difficulty where the child might be able to attract supports. Epilepsy is the most common neurological disorder of childhood. Prevalence figures suggest that 1:200 have epilepsy (Neville, 2014). Linehan et al., (2010) estimated between 4 – 10 active cases per 1,000 internationally, with Irish figures of between 9.0 per 1,000 in 2005. It should be noted that these figures are active cases and do not include difficulties and differences which may occur in those with resolved epilepsies which may occur as a result of the impact of the epilepsy on neurodevelopment. Epilepsy is a heterogeneous disorder that is characterised by different seizure types, causes and clinical syndromes (Shinnar & Pellock, 2002). It can be a pervasive condition in which seizures are merely one aspect (Aicardi, 1998) and it has a known association with cognitive and behavioural problems and significant school related difficulties (Berg et al. 2005). There is a considerable level of variation regarding the impact epilepsy will have on individual children (Jensen, 2011). Epilepsy may be self-limiting and will only last for a few years for some children (Berg, 2011). However, for some of these children, the educational, behavioural and emotional difficulties associated with epilepsy may persist after the seizures have been controlled (Berg et al., 2007). The Children with Epilepsy in Sussex Schools (CHESS) Report (Young Epilepsy, 2014), which was a major population study of 4 – 16 year olds in the West Sussex area (UK) between 2010 and 2013, sampled all children with ‘active epilepsy (n = 85 from 40 schools) and concluded that current guidelines for the management of childhood epilepsy primarily focus on seizure management but fail to prioritise monitoring of educational progress in children with epilepsy. This lack of emphasis is likely to contribute to under-recognition of difficulties as evidenced in this study. Consequently, children are not receiving treatment for, or being helped with, these difficulties. This gap in provision likely contributes to further difficulties with academic progress and has a significant negative impact on the quality of life of these children and their families. Multiple factors impact on the ability of those with a diagnosis of epilepsy to engage with the curriculum, including seizure profile and medications in those children with both current and resolved seizures. 1.3 The impact of epilepsy

The impact of epilepsy on the developing brain in infancy and childhood must be a concern in view of Shorvon’s (2009) description of epileptic encephalopathy as a “clinical state in which the changes in cognition or cerebral function are at least in part, likely to be directly due to the ongoing epileptic processes in the brain.” Shorvon goes on to state that “the epileptic encephalopathies are commoner among children that adults”. Whilst epilepsy can develop at any age it is more common among children and young people and most cases are diagnosed before age 20. In a major Irish

epidemiological study Linehan et al (2010) found that 36,844 people in Ireland

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over the age of 5, had epilepsy. Irish figures for the under 5’s are not available but international figures indicate the rate is 1 in 20 children (Shorvon, 2009). The impact on the developing child of growing up with epilepsy is well documented. The difficulties are showing up within schools and amount to more than seizure management. In the following literature review we will focus on the relationship between epilepsy and learning and show how studies indicate that children with epilepsy are at risk of cognitive deficits and underperforming in school. Studies also point to the likelihood that just having epilepsy is a risk factor for educational and behaviour difficulties, and social adjustment issues. Such studies point to the need for specialised neuropsychological assessment of children with epilepsy to identify neurocognitive deficits. In the section on parent’s accounts in Appendix 3 some parents tell in their own words of the difficulties experienced by their children in school. While there are children with epilepsy who are having good experiences of school these parent accounts are representative of many more contacts we have received from parents and could be replicated many times across Ireland.

2. Epilepsy and Educational Difficulties Reilly and Fenton (2013) contend that children with epilepsy are a high risk group with respect to cognitive and behavioural difficulties. Many children with epilepsy do not neatly fit into general categories or syndromes and this can create difficulties with respect to resource allocation and support at school level. However, clusters of cognitive difficulties which individually may be subtle, collectively present significant barriers to learning and progress in the acquisition of academic skills. Children may score below ‘at risk’ cut-offs on behavioural checklists but still have subtle difficulties in areas such as attention and may not neatly fall into diagnostic categories. Therefore, each child must be evaluated individually and a range of medical, educational, psychological and social factors should be considered in relation to any difficulties that may be apparent. Effective approaches to treating and managing epilepsy and its associated psychopathology in children require an appreciation of the intricate relationship between epilepsy and other associated disorders (Jensen, 2011). Collaboration between medical and educational professionals in the assessment and management of children with epilepsy is an essential part of a comprehensive assessment and subsequent intervention programme. According to Berg et al. (2005), population-based studies indicate that nearly half of all children with epilepsy receive some type of special education service. Difficulties in school are not confined to children who are functioning in the intellectually disabled range (for example, Oostrom, Smeets-Schouten, Kruitwagen, Peters, & Jennekens-Schinkel, 2003) and are found in those with epilepsy of differing aetiologies (Berg et al., 2005). Children with epilepsy may be receiving additional services due to lowered cognitive functioning, academic underachievement or the presence of behavioural or emotional difficulties. In many cases the children will present with multiple difficulties. For example, children with epilepsy may present with academic underachievement and also with significant working memory and/or attention difficulties. A study in the UK found that 35% of the students identified as

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having a diagnosis of epilepsy and attending secondary schools had a Statement of Special Educational Needs and the majority of those were attending special schools (Swiderske, Gondwe, Joseph, & Gibbs, 2011). This study also suggested that an additional number of students without statements were recorded as needing ‘extra learning support’ (Swiderske et al., 2011). Many children who develop epilepsy will have been identified as having special educational needs before the onset of epilepsy, suggesting that learning and behavioural problems precede the onset of epilepsy in a considerable proportion of children (Berg et al., 2005). There is a significant association between epilepsy and learning (intellectual) disability (LD) (IQ scores below 70); 20–30% of children with epilepsy will be functioning in the ‘learning disabled’ range (Berg, 2011; Murphy, Trevathan, & Yeargin-Allsop, 1995). Children with epilepsy functioning in the learning disabled range are likely to be younger at the onset of seizures, have a structural/metabolic cause for their epilepsy, have epileptic encephalopathy, and higher levels of anti-epileptic drug (AED) use (Berg et al., 2008). Epileptic encephalopathy refers to a situation where the epileptic activity itself may contribute to severe cognitive and behavioural impairments above and beyond those expected from the underlying brain pathology alone (Berg et al., 2010). Epileptic encephalopathy is associated with syndromes such as West syndrome, Dravet syndrome and Lennox–Gastaut syndrome and approximately 75% of children with these syndromes are functioning within the learning disabled range (Berg et al., 2008). According to Besag (2002), there are three possible inter-relationships between epilepsy and impaired cognition. In the first scenario brain damage or dysfunction causes epilepsy and cognitive impairment. In a second possible scenario epilepsy causes brain damage or dysfunction which in turn results in cognitive problems. The third potential scenario occurs when the epilepsy itself causes the cognitive impairment. The side effects of antiepileptic medications (AEDs) can impact on learning and may include sedation, attention problems (Besag, 2002) and motor problems (Morita, Glauser, & Modi, 2012). However, AEDs can also lead to better seizure control and result in better cognitive functioning (Besag, 2002). It is difficult to generalise with regard to patterns of cognitive strengths and needs in childhood epilepsy and it has been said that cognitive profiles are as heterogeneous as the epileptic syndromes themselves (Elger, Helmstaedter, & Kurthen, 2004). It is important to note that, in children with types of epilepsy thought to be “benign” with regard to cognitive impact, subtle difficulties may become apparent following detailed testing and these can impact on academic performance (Elger at al., 2004). Berg et al. (2008) reported that, in a group of children with idiopathic epilepsy (no underlying brain malformation), Full Scale IQ scores were significantly lower than sibling controls, with a particular weakness on the Processing Speed Index of the Wechsler scales. Sherman, Brooks, Fay-McClymont and MacAllister (2012) noted that scores on the Working Memory and Processing Speed Index of the Wechsler Intelligence Scale for Children (WISC-IV: Wechsler, 2003) were lower than those for the Verbal Comprehension and Perceptual Reasoning Index of the same instrument for children with epilepsy, but not for controls. Children with primarily focal seizures often have focal (specific) deficits that mirror the specific functions of the respective areas (Elger et al., 2004). Temporal lobe epilepsy is particularly associated with memory

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impairments. In frontal lobe epilepsy impairments have been reported in attention, working memory, planning and psychomotor speed (Elger et al., 2004). 2.1 Underachievement & Specific Learning Difficulties

Significant numbers of children with epilepsy in mainstream schools have lower academic achievements than their peers. Reasons for this difference in academic abilities are complex and may be due to factors such as absenteeism, effects of seizure, effects of AEDs (anti-epilepsy drugs), specific cognitive difficulties (particularly attention and memory), child and family attitudes, teacher understanding and peer acceptance (Reilly and Ballantine, 2011). Children with epilepsy are also at high risk of having specific learning difficulties in areas such as reading, writing and mathematics and many are performing at a level below that expected from their overall level of IQ or cognitive functioning. Fastenau, Jianzhao, Dunn, and Austin (2008) reported that 48% of children with epilepsy met criteria for a Specific Learning Difficulty (SpLD), that is, one standard deviation below IQ in at least one area using an IQ discrepancy model. Difficulties may be experienced in all domains of school achievement and clear patterns have not emerged with respect to the types of difficulty most likely to be experienced. There have however been suggestions that reading comprehension (Mitchell, Chavez, Lee, & Guzman, 1991), writing and mathematics (Fastenau et al., 2008) may be particular areas of weakness. The reasons for academic underachievement may include absenteeism, effects of seizures, the effects of AEDs, specific cognitive difficulties (for example, deficits in memory and attention), child and family attitudes and adaptation to epilepsy, teacher understanding and expectation, and peer acceptance (Reilly & Ballantine, 2011). An awareness of the impact that epilepsy can have on aspects of cognitive functioning as well as other potential reasons for academic difficulties is important for schools in order that factors which influence academic difficulties and progress can be identified and timely and relevant interventions implemented. Specific cognitive difficulties are noted in the literature, especially associated with processing speed and memory (Sherman, Brooks, Fay-McClymount, McAllister, 2012; Berg 2011; Berg et al. 2008b). 2.2 Socio-emotional and Behavioural Concerns for Children with Epilepsy

Russ et al. (2012) described patterns of comorbidity and functioning for children with epilepsy and seizure disorder in a population study based on a national data base sample of 91,605 children. They reported on 977 children with epilepsy and findings suggest those with epilepsy were at higher risk for mental health difficulties and developmental/behavioural disorders than typically developing children. Comorbidities identified included:

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Table 1: Difficulties noted as Co-morbid with Epilepsy

Comorbidity Percentage

Learning Disability 58%

Developmental Delay 23%

ADHD 23%

Conduct Problems 18%

ASD 16%

While the frequencies with which these difficulties occurred were significantly higher in children with a current diagnosis of epilepsy than typically developing children (p<.05), of significance, the Russ et al. (2012) study included children described as having a ‘previous diagnosis of epilepsy’. These are children may be in remission, or have completely resolved seizures. The inclusion of this ‘previous diagnosis’ group highlighted the increased and ongoing risk of further difficulties for children who have experienced epilepsy at some stage during their childhood. Incidence of difficulties for this group with a previous diagnosis of epilepsy was compared with typically developing children who had never had an epilepsy diagnosis. The following incidence was reported: Table 2: Frequency of Difficulties in those with Resolved Epilepsy and Those Never Diagnosed with Epilepsy

Previous Diagnosis Typical Population

Depression 7% 2%

Developmental Delay 17% 3%

ASD 7% 1%

(Russ et al. 2012 p 259)

The Chess Study, which was a major population study of 4 – 16 year olds in the West Sussex area (UK) between 2010 and 2013, sampled all children with ‘active epilepsy (n = 85 from 40 schools). A summary of finding is given in Table 3 below: Table 3: Summary of Areas of Difficulty

Difficulty % of Children

Cognitive Impairment IQ <85 55%

Learning Disability IQ < 70 40%

Memory Difficulties 58%

Processing Speed Difficulties 42%

Academic Underachievement 42%

Behavioural or Motor Difficulties 60%

Sixty percent of children who participated in this study met diagnostic criteria for at least one other behavioural disorder. Only one third of these had been previously identified. None of the participants had a diagnosis of DCD but 18% met diagnostic criteria.

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When considering this study it is important to consider that the sample were those with ‘active epilepsy’. Despite very high rates of difficulties, these results do not include those children with resolved seizures, which as seen in the Russ et al (2012) study, continue to experience difficulties. These are the category of children whose needs may be overlooked by the current resource allocation model. 3. Summary Children who have or have previously had a diagnosis of an epilepsy syndrome constitute a vulnerable group. While, for some, the difficulties they experience may fall within categorical diagnostic criteria used to allocate resources in school setting, for many this may not be the case. There is a growing awareness of the specific clusters of difficulties from a psycho-educational perspective and such difficulties are also experienced in those with resolved epilepsy. Key areas of difficulty include visual processing difficulties, speech and language difficulties, motor difficulties and aspects of executive functioning (Kernan et al., 2012; Parkinson, 2002; Randó et al., 2004, 2005; Rejnö-Habte Selassie, Viggadal, Olsson, & Jennische, 2008; Wodrich & Cunningham, 2007). Further difficulties are noted with attention, behavioural difficulties and learning difficulties.

3.1. Recommendations

1. There needs to be an increased awareness of epilepsy within education and assessment settings.

2. There needs to be increased awareness and supports within the Resource Allocation Model regarding prioritising the needs of students with a) a diagnosis of epilepsy alone, b) nocturnal seizures and c) ‘resolved’ seizures.

3. Epilepsy awareness should not be confined to seizure management alone. Epilepsy is “more than” the seizures

4. There needs to be an improved understanding of specific neuro cognitive implications on educational progress in children with epilepsy.

5. Children with epilepsy would benefit from specialised neuropsychological assessment or educational psychology assessment to elicit the full extent of their neuro-cognitive deficits.

6. Classroom supports and teaching strategies can be tailored to support children with specific neuro-cognitive deficits.

7. Children with epilepsy who have, or are at risk for, neuro-cognitive deficits which impact on their learning potential should have access to special needs supports.

Epilepsy Ireland provides awareness talks and training to school staff and allied professionals around the country and would be happy to assist in any way possible with further awareness raising about epilepsy among key professionals in education and assessment.

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3.2 Contact Details

For further details contact: Geraldine Dunne National Information Officer Epilepsy Ireland 249 Crumlin Road Dublin 12 T: 01-4557500 gdunne@epilepsy.ie www.epilepsy.ie

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Appendix 1

A brief note on epilepsy, seizures and treatment Epilepsy is a neurological condition which leads to recurrent seizures. Seizures are temporary discharges of excessive electrical activity in the brain. While causes can include brain injury, structural brain abnormalities and infections, in 50% of cases no cause is found. Epilepsy affects all age groups but is more common in the young. Depending on where in the brain the seizures arise, a range of effects may be seen. Seizures are defined as generalised or partial depending on what part of the brain is affected. Generalised seizures affect the entire brain at once and no focus of origin for

the seizures can be identified. The more common types of generalised seizures are absences and generalised tonic-clonic seizures. Absences are brief staring episodes which are more common in children. They last 5-20 seconds during which the child is unconscious and unresponsive. As they are brief and fleeting, absences can go undetected. Some children can have blinking or head nodding as features of ther seizure. Usually after an absence the child recovers quickly and can resume normal activity. However, if they have large numbers of absences (sometimes up to a hundred or more in a day) they may have significant issues with information processingand learning may be repeatedly disrupted. Tonic-clonic or convulsive seizures are associated with stiffening of the body followed by a fall and jerking of the limbs. Consciousness is lost. The seizure typically lasts 1-3 minutes before the movements stop and the person may need to sleep deeply. This recovery phase can last from minutes to hours. Other kinds of generalised seizures include tonic seizures where the person stiffens and falls but no jerking phase is involved, clonic seizures where the jerking phase is not preceded by a tonic or stiffening phase, atonic or drop seizures where the body loses tone and drops limply, and myoclonic or muscle jerking affecting the upper body. Partial seizures as the term suggests affect part or region of the brain,

whether a small part of a lobe or wider part of one hemisphere. Partial seizures are divided into further types – simple, complex and secondarily generalised. Simple partial seizures do not affect consciousness so a person may experience a wide variety of symptoms like déjà vu or tingling or tremor depending on the region of the brain involved.

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Complex partial seizures do involve consciousness being affected to a greater or lesser degree. Again symptoms vary between people and what is observed can range widely, including wandering, confused behaviour, repetitive speech and disorientation. Secondarily generalised seizures begin as partial seizures and spread to affect both sides of the brain becoming generalised seizures. Typically what is witnessed is a generalised seizure but the person may get an aura or warning before it spreads. Treatment : Consultant neurologists are the experts in the diagnosis and treatment of epilepsy. Epilepsy is treated mainly with a range of anti-epileptic drugs (AEDs). There are over a dozen AEDs used in epilepsy treatment.

Some AEDs treat a wide range of seizures and others treat specific seizure types. Side effects vary from person to person and drug to drug but can include cognitive effects on memory and concentration, tiredness, mood effects, co-ordination difficulties, dizziness, nausea, bone health changes and weight changes. While up to 70% of people with epilepsy can potentially achieve seizure freedom with medication, this is debatable as PatientPlus (2012) in the UK have stated that as few as half of this figure are seizure free. For those whose seizures do not respond to medication other options may be considered such as Vagus Nerve Stimulation where a pacemaker like device

is implanted in the chest wall which interrupts signals along the vagus nerve from the heart to the brain which helps reduce seizures in some people. Diet has a limited role in epilepsy treatment overall but certain children with difficult to control epilepsy may benefit from the Ketogenic Diet which a high fat low carbohydrate diet. Epilepsy surgery can be considered in cases where a specific area of the brain is found to be the focus of seizures and where this area can be operated on safely. Surgery has very good outcomes among people who are suitable for it and can reduce or eliminate seizures completely. Surgery is not an option in the many cases where a focus can’t be identified.

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Appendix 2 : Seizure Focus & potential effects on learning

Figure 1. The Lobes of the Brain

Frontal Lobe

Parietal Lobe

Occipital Lobe

Temporal Lobe

Cerebellum

Where no focus is identified, as in generalised epilepsy, a range of possible effects can be seen, such as auditory, verbal, visual, motor and memory difficulties.

Children who develop more than one focus, or who have generalised epilepsy, can have a combination of difficulties.

Lobe and seizure focus Possible specific difficulty

Right Temporal Lobe Focus

Visual-spatial perception Recognising symbols Memory Understanding speech Reading Handwriting Practical tasks Co-ordination Sequencing Perception of time Non verbal processing Left/right confusion

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Left Temporal Lobe Focus Language comprehension Language expression Verbal reasoning skills Auditory skills Phonetics Spelling Memory Speech sounds/words/order Analytical skills Calculations Attention to detail

Frontal Lobe Focus

Attention Planning Organisation Executive functioning Judgement Problem solving Sequential thought Expressive language Making decisions

Occipital Lobe Focus

Written word recognition Visual processing Perception Reading and writing Visual disturbances Recognising colours Object movement/position

Parietal Lobe Focus Confused directionality Naming objects Visual attention and focus Hand-eye co-ordination Spatial awareness Body awareness Perception of touch

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Appendix 3: Parents accounts of the experiences of children with epilepsy in school LD, a 12 year old boy

LD is my 12 year old son who was diagnosed with epilepsy when he was 7. He has cortical dysplasia and lesion affecting his right parietal and frontal lobe. LD had a very normal rate of development as a young child. He started school at four years of age and was average. Because he was young for the class it was decided that he would do junior infants a second time. LD, during this second junior infants, was flying with his sounds and writing. He was at an early reading level and I remember distinctly the little notes he would write around the house 'L. is cool' and 'I love you mum/dad”. He knew the days of the week and how to count to ten and back. The significance of this is that by Snr infants the next year he started to struggle and reading became very difficult, he could not remember his sounds or form letters like he used to. He was assessed by the NEPS psychologist who felt LD had a speech and language problem and advised an assessment with a speech and language therapist. The results showed LD had indeed a severe receptive language disorder and other issues that qualified him for resource in 1st class. LD's first known seizure occurred in September of 1st class and he was diagnosed after a second in October. His cognitive abilities continued to be challenging. His short term memory was shot. If he got something one day he would have forgotten it by the next. His processing speeds were incredibly slow. He was making very slow progress. Resource teaching and the epilepsy meds helped initially but with meds came behaviour problems,his frustration levels rose and tantrums ensued. He became very reclusive and prone to anxiety. He was re assessed in 3rd class and it was decided to send him to a special reading school for 4th and 5th class, which he is just returning from this September. LD, on joining the reading school was a complete non reader, any abilities he had in junior infants were lost. He could only spell his name practically. LD has access to an SNA on safety grounds as he has frequent tonic clonic seizures that are uncontrolled.He is being considered as a surgical candidate. The reading school had served LD very well being in a class of nine with an SNA and speech and language therapist on site and I found out today that his reading age has come up to a child of 8.5 years of age.It is my opinion that it is imperative that resources and assistance be given to children with epilepsy as it is so much more than just the medical condition of the seizures alone.

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L, a girl in primary school With L, having epilepsy, school can be a constant worry. As a parent I worry about her falling or taking a seizure in school, I worry about how teachers are capable of dealing with the situation. L is much slower with doing stuff now probably because of the meds she is taking. She can be singled out with teachers over this, which has happened, over being slow to take her homework down from the board and being slower writing in class. L has been refused an assessment for her epilepsy as I was told she had not got a learning difficulty but a medical condition and would not be covered therefore. I certainly would think that L would greatly benefit from SNA support even on a part time basis in class especially in certain things she tends to be very nervous now as she is afraid to say anything to the teacher if she didn’t understand something. She is not entitled to Resource hours either. I do certainly think that SNA for a child with epilepsy is so important for their own confidence. There’s no doubt they are affected with the condition by not being as attentive, forgetting things and by being moody and tired. I do not think many people or schools understand the nature of epilepsy and it’s very unfortunate for the person. C, a 13 year old boy. For us as parents and my child C, school is very challenging. His teacher and SNA are highly knowledgeable on all aspects of epilepsy so my child is often seen before he takes on a full blown seizure. C, suffers a large degree of shame surrounding his seizures so the manner in which the school handle them is hugely important. He is 13 years old. His mannerisms and his ability to concentrate change considerably both before and after a seizure. The "hang-over" after a seizure leaves him tired and disorientated for days. This poses further difficulties for teachers. He is absent from school sometimes as a result. Administration of medication is a challenge to the policies and procedures of many schools and often serves to make the child with epilepsy even more "different." While epilepsy can often be a manageable condition when kept under scrutiny schools can struggle to keep the child himself as the central focus and not the epileptic condition. The condition is secondary and should be handled in a discreet and professional manner without a sense of "taboo." My son would simply not be able to attend school without an SNA. In terms of Health and Safety it does not bear thinking about that he could be left unsupervised even momentarily. His safety would be in jeopardy. If he is not

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observed and his facial expressions not constantly monitored he might fall down, hitting his head etc. His class mates have witnessed the full force of a tonic-clonic seizure, the fall, the bloodshed, the shaking, the jerking and the frothing at the mouth the wetting and soiling. The SNA can help my son and keep him safe while shielding his class mates and saving my sons' self respect. Fortunately my son does receive Resource Hours and it is imperative that this should continue. Prior to and during seizures my son is quite unaware of his surroundings let alone able to absorb information and learn. There have been large gaps in his learning and the Resource Hours serves to help him catch up. We’ve had issues with his ability to learn, poor memory and concentration, and the side effects of medication. There are issues with missing school, school tours and the school policies, lack of sleep and poor quality sleep and lack of knowledge of some of the staff. This is the second school C has attended. I believe that epilepsy amongst school going children should be dealt with at a National policy level. When my son has a seizure it affects everyone in the building immediately and normal living is postponed for the duration. Life as we know it, stops. Epilepsy forces life as we know it to stop, on a regular basis therefore it must be given more consideration within schools. KC, a 17 year old girl Typically, 17 year olds go to and from school alone, engage in a full curriculum and a busy schedule of extras. My daughter KC is different. She has complicated epilepsy and experiences on average ten plus seizures per day/overnight. This affects all areas of her life. Indeed it has an enormous effect on our family’s life. KC was diagnosed in 2005 at age 9 and maintained fair control of seizures until she was around 13. Difficulties controlling her seizures began at age 13/14 when she had problems tolerating medication increases and was hospitalised again from August 2012 through to April 2013 (8 months in total). During this time, KC underwent six drug trials and spent six months in a wheelchair, unable to sit forward or walk. Her epilepsy was playing havoc and a 24 hour EEG captured 40-50 seizures. She was diagnosed with refractory frontal lobe epilepsy and a stress condition. As well as sickness, side effects, seizures and chronic weight loss, KC experienced hallucinations and even violent, repetitive psychosis.

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KC attended a private school from 2004 (3rd class) until TY in 2013 when challenges became insurmountable She missed most of 3rd year due to hospitalisation and although she attempted three subjects for the Junior Cert exams, she failed to complete two of the three papers due to seizures. When returning to school in September 2013 the hospital provided written support and phone calls to assist with the transition back to school. The school were invited for education and it was suggested that they create a downstairs programme for KC’s classes. Despite this, the school did not take up on the education opportunities with Epilepsy Ireland or the hospital team. She continued to have multiple, daily seizures and the school remained ‘nervous’ of this resulting in daily phone calls asking that I to take KC home. KC was excluded from her TY trip and I was then told I would have to go and supervise her. I did as KC was so upset. The cost for us was almost four times more. Back at school, KC was still unable to climb stairs and was regularly asked to sit in sick bay whilst classes went ahead without her.. Despite requests by the hospital to change some classes downstairs KC had to check with the office before every class to see if a ‘last minute change’ could be made. No long term changes were made, resulting in KC being excluded from certain subjects. In October 2013, the principal contacted me as KC had a series of unresolving seizure clusters, resulting in hospitalisation for 24 hrs. I was told they could not accept her back until they assess things further. I was told this event had upset a ‘lot of their young staff and pupils’. A school board meeting took place (without my being present) after which they said KC should take ‘time off until better’. KC’s father, myself and the entire hospital team discussed this at length and agreed that this school was not the right environment for KC for a large number of reasons, all of which resulted in KC feeling very excluded. Drs verified that KC’s condition will affect her health for years to come, so this left her with no school place. The only options were home schooling or a new school. We home schooled for the rest of the year. She was granted just 7 hrs per week to do this. That all said, I understand that KC’s condition is chronic and complex and highly stressful to observe coupled with the disruption this brings upon a school. It is not an easy feat for a school to be asked to carry on as if normal, when it just isn’t! KC does not get a warning sign now before loss of consciousness. Her body is rarely without black and blue bruises. She continues to suffer from transient mobility issues, a trendelenburg gait when going up steps and a gag when

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liquid is swallowed. Today, she is under the care of an adult epilepsy service and continues to experience some 60 plus breakthrough seizures per week (partial and generalised) and, on average, an emergency hospital admission every 6-9 weeks to abort prolonged seizures. Her seizure spectrum is wide and injuries are common. No matter where she goes, the risks of seizures and falling follow her. We have been told that she is in the top percentile of very aggressive epilepsy. Although, KC hasn't attended school practically for the last two years (3rd year and TY) she has refused to let this hold her back and was determined to return to a new school this month (Sept 2014) for her Leaving Certificate cycle. Her first day in the new school went like this: 8.45 a.m. drop KC off. Mum goes home and waits for the phone to ring. Phone rings at 12 p.m. Unfortunately seizure clusters haven’t resolved in fifteen minutes. Mum goes to the school, administers midozalam and takes KC home in wheelchair. It seems that a full school day is just too tall an ask at the moment and so we will try part time home tuition and part time school instead. We are now in the middle of the very difficult process of sourcing tutoring for her. The most remarkable thing about our story is KC herself. Today, aside from dealing with her medical condition and side affects of medications, KC functions quite well and is determined to complete her studies. She is an inspiration to me and everyone she comes into contact with.