Epilepsy and school

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Whether your child is starting school for the first time, or returning to school, you will need to consider what the school should know about their epilepsy. Most children with epilepsy will have positive experiences of school but problems can arise so it’s good to have thought about how to deal with them. Parents often have concerns about what to tell the school and when. A big worry can be how the school will handle seizures. This is understandable. This section deals with common concerns parents raise and gives suggestions for working with the school.

I haven’t told the school yet about my child’s seizures … do I need to?

Yes. You will need to tell them as it’s best for your child that the school staff know how to deal with seizures. Otherwise the seizures might be misunderstood or the wrong first aid could be given. Not everyone in the school may need to know but key staff need to be informed on how to support your child.

I’ve told the school but they still don’t know enough about my child’s epilepsy

They will need information about the particular type of epilepsy the child has. Epilepsy varies from child to child so staff need to know what to expect and what to watch out for. The support a child with absence seizures needs is different from what a child with tonic clonic seizures needs and both will be different again from children with focal/complex partial seizures. The school may have experience of children with other kinds of epilepsy or they may have no experience at all to rely on. The best way to get a feel for their understanding is to meet with the staff and discuss it. Epilepsy Ireland staff can help this and can provide Epilepsy Awareness training for teachers and at times for students also.

What is an epilepsy care plan and do we need one?

An epilepsy care plan is a document that sets out what’s to be done in school if your child has a seizure, who is to do it and when they are to do it. It contains descriptions of the seizure, descriptions of treatment, instructions for seizure management, first aid, administration of emergency medication if required and whether or not the child needs medical attention. It contains contact details for parents, the GP, emergency services and other relevant numbers also. There is a template for a plan in the Epilepsy Ireland Teacher’s Pack. The school should keep a copy on file and parents should keep a copy too. It’s a good idea to draw up a care plan at the beginning, as soon as the child has been diagnosed, and agree it with the school, sign and date it. The care plan needs to be updated as seizures and treatment change over time.

Things have changed over the summer with the seizures, should I tell the school?

If your child’s pattern of seizures has changed in any way over the summer months then let the school know how this affects them. If the child is having more seizures, the school can look at ways of supporting them. The school can take account of their seizures if there are any academic problems or if days are missed due to seizures, hospitalisations or appointments. If seizure control has improved it could mean looking again at decisions about the subject levels chosen or restrictions around sports or practical subjects. Any changes to seizures or to treatment should be written into the care plan as an update.

Things have changed with my child’s treatment, should I tell the school?

Epilepsy medications can sometimes have side effects on thinking, memory, behaviour and mood. The school staff need to know about possible side effects so that they don’t assume any problems are due to poor behaviour or lack of attention. In this way they can take these effects into account and even adjust the workload if necessary.

What about any new teachers who are not familiar with my child’s epilepsy?

If your child has new teachers don’t assume the information will just be passed on to them. Ask the principal or another teacher to explain what the new teacher needs to know. Take in a Teacher’s Pack from Epilepsy Ireland to be given to the new staff.

Seizures could happen during school hours, what can I expect the school to do?

The staff should follow the epilepsy care plan that you agreed with them and that is kept in the school. If they need more training they can request a talk from Epilepsy Ireland.

If my child only has sleep seizures should I still tell the school?

Yes. Sometimes sleep seizures can affect the child’s alertness or energy levels during the day. It’s best the school know so they can take it into account. Also, if overnight trips are planned they would need to know. A boarding school will certainly need to know.

My child’s seizures are controlled; does the school still need to know?

Yes. In the event of seizures returning they need to know what to look out for and what to do. Also it means the staff can be more aware of any other learning and behaviour issues that could be connected to the epilepsy or the treatment.

My child attends boarding school. What can I ask the school to do?

Firstly, the school needs to know about all the aspects of the child’s epilepsy and treatment that can have a bearing on school life. The school is also the child’s home from home and the staff need to take what safety measures they can to support the child and reduce their injury risk. This could mean ground level accommodation if available. In cases of sleep seizures the school need to know that top bunks are not safe and that bed alarms, seizure detection devices, and ventilated pillows can help reduce risks. Buccal midazolam needs to be stored safely but in a place where it can be easily reached if needed. Parents need to keep note of expiry dates of buccal midazolam and replace it when it has expired. Medication needs to taken as prescribed and in the absence of parents the staff or school nurse need to ensure the child is taking the medication as required. Medication reminders can be programmed into a child’s mobile phone if they are allowed to use one in school.

Are school staff trained in the use of Buccal Midazolam?

Unless they have had a child in the school previously who needed it, it is unlikely the staff will have this training. The school can link in with the local public health nurse for a demonstration and they can request the full ‘Epilepsy Awareness and Buccal Midazolam’ training from Epilepsy Ireland which we can offer throughout the country.

Are staff willing to give buccal midazolam if needed?

Sometimes this can be an issue in schools as there is often a policy of not giving routine medication. However, emergencies are different. In the case of epilepsy, especially prolonged seizures, not intervening isn’t an option. While all staff can’t be forced to give emergency medication there needs to be a designated staff member, such as an SNA (Special Needs Assistant), who can give it.

There also needs to be at least one other staff member trained as a back-up and willing to give it in case the designated staff member is not available.

What about buccal midazolam storage and expiry dates?

The school needs to store buccal midazolam safely but in a place where key staff can access it easily. There are two forms of buccal midazolam: Epistatus which is a bottle of liquid, and Buccolam which comes in pre-filled syringes. When storing the bottle the lid needs to be screwed on securely because the liquid could evaporate if it is loose. Parents need to keep a note of expiry dates of medication and replace it when it has gone out of date.

Is epilepsy considered a special need?

Epilepsy may be considered a care need and this means a child can sometimes be granted access to an SNA. The National Council for Special Education (NCSE) is responsible for providing resources and SNAs through their network of Special Educational Needs Organisers (SENOs) throughout the country.

Do school staff have information on epilepsy and a Teacher’s Pack as standard?

Epilepsy Ireland sent a teacher’s pack to every school in the country when it was first published and new updated packs (2018) are available from all our local offices. 

Is there anything else I need to give to the school in case of seizures?

If buccal midazolam is prescribed you need to give it to the school to keep safely. If the child is likely to wet or soil themselves in seizures a spare set of clothing or a tracksuit can be kept in the locker as a back-up.

Can epilepsy affect my child’s learning?

This can be a difficult thing to be sure of but if you think it could be the case then ask the teachers about it. It may be possible to get referred for a psychological assessment or sometimes this can be done through the hospital. Most children with epilepsy have the same range of abilities as other children. However, having epilepsy and being on medication can lead to difficulties with concentration, memory and information processing. These in turn can affect learning. It’s good to deal with this early before a child falls behind.