Seizure Types & Safety Protocols

Schools need to integrate IEPs with IHPs

Individualized Education Plans (IEPs) must be synchronized with Individual Healthcare Plan (IHP) of autistic children with co-occurring epilepsy. Schools have to be familiar with safety protocols and emergency know-how related to seizures. In India, most schools are bereft of such awareness. Indeed, the integration of IHPs should be a pedagogic requirement, it is necessary for attaining learning outcomes in special education.  

Types of Seizures

Each affected child’s seizure is unique to them. Some seizures cause loss of consciousness, whilst some do no not. Some last for a few seconds while others for several minutes. Seizures can be focal where epileptic activity is happening in one half of the brain or they can be generalized where it affects both halves of the brain.

The brain is segmented into different areas called lobes and they control different functions. What happens during a focal seizure depends on which lobe and in which part of the lobe it starts. When a focal seizure spreads to other parts of the brain, it becomes a generalized seizure.

Following are the commonly occurring different type of epileptic seizures:

(i)         Tonic-Clonic Seizure

It is a high severity seizure. There are two phases - the tonic phase and the clonic phase. The tonic phase is characterized by:

·      Loss of consciousness - no awareness of what is happening

·      Muscles going stiff and falling to the floor if standing

·      Air pushes out of the voice box making a sound as if the child is in pain, this is the air being squeezed out of the lungs

·      Drooling

·      There is a possibility of the child biting his tongue and inside of the mouth  

The seizure may stop at the tonic phase and may also proceed to the next level of severity that is the Tonic-Clonic seizure. This is characterized by:

·      Quick & rhythmic jerking of the limbs

·      Losing control of the bladder or the bowels

·      A blue tinge around the mouth, if breathing is impacted

·      Most tonic-clonic seizures last between 1-3 minutes; one that lasts longer than 5 minutes is a medical emergency.

After a tonic-clonic seizure, the child falls into deep sleep, on waking the child will have headaches and aching muscles, sluggish motor coordination. The child will have to take off from his learning cycle and the whole focus has to be on rest and recovery. The nerves are fragile and no task should be given to the child which requires concentration as this may cause stress and hurt the child’s eye muscles. The child has to be mobilized very slowly.  After a seizure or in the post ictal stage, management is very crucial for stopping the cycle of seizure which is a combination of medicines, care and avoidance of triggers.

(ii)       Tonic Seizure

During a tonic seizure the child’s muscle stiffens and there is loss of consciousness. Sometimes, eyes roll back into head as the muscles in chest, arms and legs contract. As the chest muscles tighten it becomes difficult for the child to breathe and a gargling noise is produced, the face and lips lose colour. During a tonic seizure, the child has to be supported or else will fall. Falls are sudden and can cause injury, often to the head. The onset of a tonic seizure is preceded by an aura, usually the eye movements, gaze is an indication, the child has to be supported at this stage itself.

(iii)      Atonic Seizure

Called drop attacks it leads to loss of all muscle tone and the child drops heavily to the floor. Seizure is brief and the child is able to get up and walk again straight away. However, risk of injury due to fall on nose, face and head is high.

(iv)      Myoclonic Seizure

Myoclonic Seizure is also called Muscle jerk seizure. Usually it happens in either arm or both, jerking can be very mild like a twitch or very forceful. The duration of the seizure is for few seconds. It can be a single jerk or a cluster of jerks. It can be injurious. Myoclonic jerks in the legs may cause a child to lose balance and fall or they may bang their hand on some sharp / hot object.

(v)       Absence Seizure

This develops in children and adolescents. Some can have several absence seizures in a day. The child loses contact with environment for few seconds and will stop doing whatever he/she was doing. Signs are blinking and slight jerking of the body. Recovery is immediate but the child may appear confused afterwards. These are the signs of a typical Absence seizure. There can be Atypical Absence seizures also. They last longer, muscle tone is impacted less and the child can move around, may respond but will be clumsy. Absences are difficult to spot. The child may appear ‘switched off,’ and daydreaming.

Applicable for all types of seizures is the fact that the child should not be given anything to eat or drink during such time.

Status Epilepticus

A seizure that lasts too long or if one after other seizure happens without recovery, it is called Status Epilepticus. Status Epilepticus can happen with any seizure but is most dangerous with tonic-clonic seizures. This is called Convulsive Status Epilepticus, it is an extreme emergency. It is very dangerous, can cause permanent damage and even death. SUDEP or Sudden Unexpected Death in Epilepsy is connected to tonic-clonic seizures, according to scientific literature on Epilepsy. The exact cause of why SUDEP happens is not known but research evidence shows that the seizure may sometimes lead to changes in heartrate or breathing. This could cause stoppage of breathing or the heart to stop beating. Children with frequent tonic-clonic seizures are at a very high risk of SUDEP.

Post Ictal state (after the seizure)

Post ictal state of the child in the case of tonic-clonic and tonic seizures can last from few minutes to a few days. The child will feel extremely tired, have balance issues, headaches, will be confused and may even have memory lapses. The child will have cognitive problems, face difficulty in concentrating, thinking and sequencing. The child can show repeated smacking of lips, scratching head, chewing, may become withdrawn, agitated and there maybe spells of rocking and hyperactivity. Everyone has to be patient.

Post Ictal Learning

Missing school is one of the consequences of seizures in epilepsy. But parents should not get worked up and be focused on rest, recovery and adherence to the treatment plan. The focus in this phase should be only on conduct and maintenance of activities of daily living (ADL) and relaxation. The child will decline tasks, respect it.

Once they resume school, the child will need high level of supervision and repetition of lessons. Epilepsy does not only mean having seizures; post-ictal phase can bring dizzy spells, and disorientation. From an autism perspective, memory means skills, names, faces, sequence, places and facts. Before a seizure, memory can be lost as the brain does not store properly. For eg: the child is taught a new skill but will not have memory recall, therefore, after recovery the teacher has to go over the lesson and adapt to the child’s differed learning pace. During a seizure, loss of consciousness can stop the brain from encoding and storing memories, after a seizure confusion can stop memory from working properly.

Visual charts can be used as memory and revision aids. The lessons must be short and frequent breaks should be given. There should be no stress on performance, teachers have to build gradually.

If there is a cluster outbreak and frequency in seizures is reported, the child’s brain between the seizure episodes does not recover fully, in such situations prolonged phases of rest is required which can mean more time-off from school. The whole focus then has to move on the care plan.

Seizure Triggers

Some of the major triggers for seizures are as follows:

·      Not taking Anti-Epileptics Drugs (AEDs) as prescribed or missing a dose.

·      Sleep disruptions / not getting enough sleep or lack of sleep

·      Onset of adolescence

·      Missing meals

·      Stress & overwork: Stress, tiredness and seizures form a cycle. If a child is feeling stressed, there is a more likelihood of having a seizure and this can make the child stressed. This can lead to other behavior challenges, disturbed sleep and eating less, which also are triggers.

·      Heavy breathing exercises that are contraindicated in epilepsy.

·      Flashing or flickering lights or certain patterns. This is strictly on the avoidance list for those diagnosed with Photosensitive Epilepsy. This is detected by an EEG.

·      No alternate therapy, supplement, ayurvedic medicine should be taken without the Specialist doctor’s advice.

Avoiding seizure triggers must include:

·      Taking AEDs as prescribed

·      Having a good sleep routine

·      A balanced healthy diet.

·      Stress reduction

·      Eating at regular meals

·      Light exercises and regular walking: Walking is the safest exercise and gradually duration, distance or number of rounds maybe increased. Physical activity is important as it reduces fat levels and increases oxygen flow to the brain. It also keeps joints, muscles and bones mobilized. Both healthy diet and physical activity levels are important in epilepsy as its absence can lead to other health conditions.

·      Some patterns can also trigger a seizure. If a child during a seizure cycle (seizures happening at regular intervals not being controlled by AEDs) is looking intently at certain patterns, distract the child. Or if the child is compulsively doing certain activities like walking, create break times to avoid overstimulation of brain cells.

A Note on AEDs

When AEDs are taken, they are absorbed by the blood and taken to the brain. When it reaches the brain, it balances the control of electrical impulses and prevents spikes. For the AEDs to work properly, a steady stream is required in the blood, this means that AEDs are to be taken daily in prescribed dosages at prescribed times. Most autistics need to take AEDs for life to prevent the seizures from returning. Dosages may be increased or tapered depending on seizure activity. It is necessary to take the same brand of AED every time. Two brands of AEDs with the same generic name have the same active ingredient, but this does not mean they are identical. This is because drugs contain other ingredients, such as colouring and binding agents (ingredients that hold the tablet together), which can be different from one version to another and can affect how the drug is absorbed in the body, which could affect how well the active ingredient works in the brain to stop seizures.

What AED will work for which child is decided by the doctor, depending on the type of seizure, age and weight of the child, other medical conditions. The aim of the doctor is always to find an AED that works well for the child and does not cause much side effects. The specialist doctor may prescribe a combination of AEDs called polytherapy if one AED is not able to control the occurrence of seizures. To check whether the AEDs are working properly, the specialist doctor may prescribe blood tests that analyses the concentration of the medicine in the blood and thereby determines its efficacy or its inadequacy. Therapeutic drug concentration monitoring (TDM) is the test that uses blood levels to individualise epilepsy treatment. However, these tests are strictly done on doctor’s advice and only when AEDs are not resulting in seizure control.

Keep a check on the child’s weight as this has a bearing on the AED dosage. Some AEDs can impact bone health, so doctors generally prescribe a Vitamin D supplement.

Epilepsy Care & Treatment Plan

Seizure begets seizures, so all medical practitioners prescribe to prevent its occurrence. The family has to meticulously implement the doctor’s prescription. The dosages have to be taken exactly as instructed. Any side effects like rashes, mood swings, aggression, upset stomach that the doctor flags have to be watched closely. Medication should never be missed.

It is important to have regular reviews with your Epilepsy Specialist Doctor to make sure the treatment plan is working well.

Family members, friends and carers must be made aware that the child has epilepsy, is on medication and needs vigilance, at times acute vigilance incase the child is in a seizure cycle.

Special schools & SEN divisions

Teachers, Assistants, Security and Housekeeping staff, require to undergo Epilepsy awareness training. The school must be in touch with parents whose autistic children have a co-occurring epilepsy condition. The parent needs to inform the school about the child’s AED dosages and an assigned staff in school should be responsible to give dosages as prescribed and at a time that has been prescribed. 

If some emergency medication has been prescribed by the Doctor, the parent must make it known to the school and the condition under which it has to be administered.

First Aid

Not every seizure is an emergency though all seizures are serious. There is a need to be calm, keep the child safe and follow the protocols relevant to the seizure type of the child. Make sure there is no crowding near the child and no loud noises. Cushion the child’s head. Administer emergency nasal spray if recommended by doctor. Check and note the duration of the seizure. Once the seizure is over, keep an eye on the child, place the child in a recovery position so that he can breathe properly. To know more about recovery position, see this link https://www.nhs.uk/conditions/first-aid/recovery-position/

Calling an ambulance is required in the following conditions:

·      When a tonic-clonic seizure lasts for more than 5 minutes

·      One tonic-clonic seizure follows another without regaining consciousness

·      When there is a severe injury due a fall during the seizure.

Teachers in school and parents at home should know this gradation as part of their protocols on managing seizures.

IHP & IEP

IHP & IEP are two sides of the same coin. The IHP has to specify the medical conditions of the child, supervision criteria and details of medicines to be taken. It should also mention who in the school environment will be responsible for its implementation. The class teacher has to ensure that the child’s IHP is shared with relevant departments. Teachers must put in place a no-fall policy because this is how injuries happen during a seizure and can result in dental injuries, fractures, scalding objects on self, falling down stairs. The IHP is an important determinant of the pace of IEP delivery as also its structure. Both must be written with inputs from the parent.

What is required is not dilution of the curriculum but it’s adaptation to the child’s healthcare needs. Missed out lessons and class hours must be covered up by teachers. Additional support is the right of the child.