What is Epilepsy?
Epilepsy is the most common neurological condition, defined as a tendency to have recurrent seizures (sometimes called ‘fits’). Seizures are caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in messages passed between the brain cells. This disruption can cause messages to be mixed up or stopped.
What is experienced in a seizure will depend on where in the brain the epileptic activity begins and how widely and rapidly it spreads. For this reason there are many different types of seizures and each person will experience epilepsy in a way that is unique to them.
About our Service
The Paediatric Epilepsy Service consists of a team of three Consultants, a neurologist, a paediatric Epilepsy Specialist nurse and an epilepsy transition specialist nurse.
Dr Dhorajiwala, Dr Massarano and Dr Haider- Consultants with an expertise in Epilepsy.
We work in partnership with parents/carers and multi-agency teams for children and young people aged 0-18 years who have a diagnosis of epilepsy. Other agencies include nursery, school, ISCAN (Integrated Service for Children with Additional Needs), the GP, paediatric neurologists, neurophysiologists, Healthy Young Minds, neurosurgeons and children’s social care. The level of involvement of different services depend upon the child’s individual needs.
Any videos you send to the specialist nurse to establish a correct and accurate diagnosis will be shared electronically/ by WhatsApp with your child’s Epilepsy Consultant and, if necessary, the paediatric Neurologist at Royal Manchester Children’s Hospital, with the sole aim of providing your child with the best clinical advice possible.
*If you do not want videos to be shared this way please let us know*
Mental Health
Epilepsy is not a mental illness, yet children and young people with Epilepsy are four times more likely to develop a mental health problem than their peers.
Reasons for this can be;
- The underlying cause of Epilepsy- injury to part of the brain that controls moods is a common cause of Epilepsy. This can lead to difficulties with emotions and mental wellbeing.
- Hormone fluctuations can affect both mood and seizure frequency during puberty
- Also in the hours, days leading up to and, or following a seizure can leave people feeling confused, sad, worried, irritable, frustrated, or angry.
- Sometimes anti-epileptic medication can positively and negatively affect mood, occasionally contributing to symptoms of mental health problems.
- Anti-epileptic medication works by affecting the brain cells and neurotransmitters in order to manage seizures, therefore can have an effect on mood and mental wellbeing and can affect processing speed.
With the right help and support, including early intervention, mental health can be significantly improved.
There is lots of advice and support to be accessed. Please see the mental health offer in Tameside and Glossop for more information, support and resources;
https://
Kooth is a recent campaign, there are lots of resources online. Their motto is Don’t Do It Alone and it is endorsed by young social media influencers
https://
Mental health training for parents
MindEd is a free educational resource on children, young people, adults and older people's mental health- www.
Mental Health/ wellbeing books
- The Huge Bag of Worries Paperback – 6 Jan 2011 by Virginia Ironside
- Think good, feel good – by Paul Stallard
- The Young Mind – An essential guide for parents, teachers and young adults’ published by the Royal College of Psychiatrists (2010)
Mental health/wellbeing/calmness apps for smart phones
Mindshift SAM Mood kit Calm Headspace
Courses for parents
Epilepsy action are offering a free 8 part course for families to complete to help support parents/carers in managing a child with epilepsy.
Please visit: https://learn.epilepsy.org.uk/courses/your-child-and-epilepsy/
Did you know that any parents/carers who live in the Tameside are able to access free parenting course. This offers a wide range of online modules to complete ranging from birth to teens.
Simply visit- www.
Access code for Tameside residents- SUNFLOWER
Learning and behaviour
Many children with epilepsy will achieve both academically and socially. However, children with epilepsy are at greater risk of learning and behavioural issues.
It is vital any difficulties are identified and addressed early by health and education authorities responsible for your child’s well-being.
If you have any concerns please discuss them with the school SENCo/ SENDCo and your epilepsy team.
Here some links that may be helpful.
https://
https://
Riding the rapids
This is a free course for parents and carers for children who have a diagnosis of Autism, severe learning disabilities or complex physical disabilities. Please see link below to self-refer.
https://
Schools
Your child’s school will be given an individualised health care plan for your child and they will receive training by your Epilepsy Nurse Specialist. This will cover;
• Epilepsy awareness
• Potential impact on learning and behaviour
• Basic seizure first aid
• Rescue medication (if prescribed)
There is also a free online guide for teachers with a lot more information on how your children’s learning can be affected;
youngepilepsy.org.uk/guideforschools
This guide is for schools supporting young people with epilepsy, it covers the above and also includes the policy on supporting pupils with medical conditions.
Sleep
We know feeling tired and lack of sleep can be triggers for seizures. If you are experiencing any issues around sleep or want to improve your child’s sleep, please contact your epilepsy nurse specialist for a pack on promoting better sleep hygiene.
Also, Cerebra is a charity who help children with brain conditions and also help their families in many different ways. They can help overcome obstacles families may be facing and enable families to discover a better life together with their child. One of the services they provide is a Sleep Advice Service.
The link is: https://
They understand that if you have one child that doesn’t sleep, the whole family suffers. The range of sleep services will help your child – and everyone in your family – get a good night’s sleep.
Their Sleep Guide gives detailed information on how you can tackle issues to improve your family’s sleep and our sleep cards offer advice on dealing with specific sleep problems.
If you have a question or query about their service, please email at sleep
Medication
For more information on medication or medication information leaflets, please visit;
Medicines for children- https://
In relation to GPs switching medication brands on occasions. Please see the guidance below from the MHRA;
Epilepsy 12 National Audit of Care
We are participating in a national audit project called Epilepsy 12. It aims to monitor and improve the standard of care that is provided to children and young people with seizures or Epilepsy.
It is in collaboration with the Royal College of Paediatrics and Child Health and is funded by NHS England and the Welsh Government. It is part of the wider National Clinical Audit and Patient Outcomes Programme (NCAPOP).
For more information on Epilepsy12- www.
*You have the right to opt out if you do not wish for us to include your child’s data in the audit. Please let us know if you wish to opt out*
Our most recent report:
SUDEP
SUDEP is sudden unexpected death in epilepsy. It is ‘rare’ or ‘uncommon’ and although the risk of this for children with epilepsy is lower than adults, it is something you should be aware of.
It is important you are aware of potential risks so you can discuss the best ways to manage and reduce them with your child.
Risk factors can include;
- Night time seizures/ seizures that occur in sleep
- Prolonged convulsive seizures that last more than five minutes (status epilepticus)
- Seizures that are difficult to control with treatment
- Not taking Anti-epileptic medication regularly as prescribed, or stopping medication completely
- Other additional significant long-term health conditions
Please speak with the epilepsy team if you want further information on this, or if you find yourself worrying about how best to balance keeping your child safe, whilst encouraging your child’s growth and independence.
For more information you can look on SUDEP Action- https:/
Alarms and First Aid
Some people with epilepsy find it helpful to consider safety aids or equipment that might help them with day- to –day life.
For example, an alarm that can alert family or friends when someone has a seizure.
For more information please see the link: https://
Covid19 Vaccines
People with epilepsy aged 16-64 were included in one of the priority groups to receive the vaccine early, so most people with epilepsy should already have been invited to get the vaccine. If you are 18 or over and think you may have been missed, or haven’t booked your appointments yet, you can book now https://
People with epilepsy aged 16 and 17 are also eligible for the COVID-19 vaccine, but online booking is not available in all parts of the UK for this age group. If you are in this age group and have not been invited to book a COVID-19 vaccination, contact your GP.
Currently the Pfizer vaccine has been approved as safe and effective in children aged 12 to 15. But the UK government has not decided if the vaccine will be offered to all children in this age group.
At the moment, the vaccine is only available to children under 16 at high risk of being exposed to COVID-19, who are likely to get very ill if they catch it. This includes older children with severe neuro-disabilities who often get infections affecting their breathing.
How to contact
Please feel reassured that you can contact the Children’s Epilepsy Nurse Specialist during normal office hours
Monday- Friday Tel 0161 922 5294 or Mob 07789 083970 (between 09.00-17.00)
You may contact at any other time as an answer phone service is available for you to leave a message. Please ensure you leave your name, address and contact telephone number, and your message will be attended to as soon as possible. This may not be the same working day but is usually within 72 working hours.
If you are concerned your child is acutely unwell, DO NOT wait for the nurse to contact you - seek help from your GP or local Accident and Emergency Department
In an emergency, always telephone the Ambulance Services immediately by calling 999.
Yvonne Combs- Secretary to Dr Massarano and Dr Dhorajiwala- Tel: 0161 922 5040
Claire Johnson- Secretary to Dr Haider- Tel- 01619225257
Dr Ram -Paediatric Neurologist. Based at Royal Manchester Children’s Hospital
Lianne Fielding- Roald Dahl Paediatric Epilepsy Specialist Nurse- 01619225294 or Mobile/WhatsApp: 07789083970.
Email:Lianne.
Claire Palmer- Roald Dahl Epilepsy Transition Specialist Nurse- 0161 922 5294/ 07500050438
Referrals
We accept referrals from Accident and Emergency, the Children’s ward/ Observation & assessment Unit and GPs
The Epilepsy Nurse Specialist is based at:
Tameside General Hospital
The service aims to:
- Establish a correct diagnosis
- Provide an ongoing epilepsy management plan including treatment
- Work in partnership with parents, children and young people
- Offer support in the home environment
- Provide advice / information and counselling about epilepsy and treatments
- Provide Information on medication and side effects
- Provide nurse led clinics including teenage clinics/ transition to adult services
- Provide information on safety / first aid and training on rescue medication
- Support in school (individualised care plans) and address any issue of concern (only with parental consent)
- Provide information on lifestyle issues
- Provide information about support groups and voluntary organisations
Provide training and education to others involved in your care
Hope for Paediatric Epilepsy (HOPE) www.
HOPE is a Support Group for Parents with children and young people who have Epilepsy. They have a Facebook page that you can become a member of too.-
- Mutual support through contact with other parents of children and young people with epilepsy
- Building relationships
- Sharing knowledge and information
- Gaining knowledge and information
- Building confidence
- Sharing difficult and challenging situations can be encouraging (knowing that you are not alone!)
- Opportunity to help other parents and families
- The chance to influent service provision for children and young people with epilepsy within Tameside
- The support group is an informal meeting for parents and carers. We occasionally invite different agencies and speakers to talk to us about all topics around childhood epilepsies.
Roald Dahl Charity
Useful mental health support/ wellbeing information and resources
https://
www.
www.
www.
Good websites for reliable information, advice and support are;
- Epilepsy Action- https://www.epilepsy.org.uk/
- Young Epilepsy- https://www.youngepilepsy.org.uk/
- Epilepsy Society- https://
epilepsysociety.org.uk/ what-we-do - NHS website- https://
www. nhs.uk - Patient- https://
patient.info - St John ambulance https://www.sja.org.uk
(search for Seizures (fits) in children)
Convulsive Seizures
- Note the time and start to obtain videos
- Turn onto side as soon as possible without restricting movements- but please not this is unlikely to be possible whilst a convulsive seizure is ongoing.
- 999 if concerned about breathing
- 999 if convulsive seizure lasts 5 minutes or more
- 999 if seizures are clustering and consciousness is impaired between
Non-Conclusive Seizures
- Note the time
- Guide away from danger
- Talk reassuringly to them
Stay away from them until fully recovered
We currently have two research studies; CASTLE and REGAIN.
Both CASTLE and REGAIN focuses on Rolandic epilepsy which is the most common type of epilepsy. Affecting about one sixth of all children with epilepsy in the UK. You may hear ‘rolandic epilepsy’, ‘benign rolandic epilepsy’ or ‘benign childhood epilepsy with centrotemporal spikes’. They are different terms for the same condition.
Children with Rolandic epilepsy find that their learning, sleep, behaviour, self-esteem and mood are also affected, and this can cause stress in the family. Children with rolandic epilepsy quite often also have other symptoms that affect their speech, attention, reading ability or coordination.
CASTLE (Changing Agendas on Sleep, Treatment and Learning in Childhood Epilepsy) looks at adapting an existing sleep behavioural treatment to the sleep problems experienced by parents of children with epilepsy.
The goal of REGAIN (Rolandic Epilepsy Genomewide Association International) is to find the genetic basis for susceptibility to seizures and associated symptoms that can affect speech, attention, reading ability or coordination.
Both studies hope is to be able to improve diagnosis and understand why each child with rolandic epilepsy is different, and to point towards new treatments that are more effective and have fewer side effects.
All medicines and treatments we have for epilepsy today are available because clinicians, scientists and researchers have worked together to discover and develop new treatments and care pathways through ‘clinical research’. Clinical research studies are designed to answer questions and improve the health and quality of life for patients, including children. Taking part in research is completely voluntary and though it may or may not help your child personally, it will help to provide vital information that may help epileptic children in the future.
The senior clinical Research nurse will be in touch to ask if you would like to take part in the study if your child meets the criteria.
For more information on this; Childhoodepilepsy.org and Castlestudy.org.uk
Why have I been asked to video an episode?
This explains
- The importance of obtaining a video and how a video can be used to support a diagnosis.
- Why videos the most helpful tool in diagnosis
- Why you would need to video a child having a seizure or strange episode
We understand that it seems disrespectful, scary and not a natural thing to do but it is really important for the following reasons:
- Children/young people rarely have a seizure when they attend a hospital appointment so the doctors and nurses do not get to witness them.
- If we asked 10 people to watch a video of a seizure or episode, each person would give a different description of that they have seen.
- For every description of an epileptic seizure, there is a non-epileptic mimic. Most of these are good news so it is important for us to be able to discriminate between them.
- 20 years ago, epilepsy was often misdiagnosed. With the use of video footage, misdiagnosis is now rare.
- There is no reliable test for epilepsy between episodes; a brain wave test can’t give us the answer!
*Not all changes in behaviour are caused by Epilepsy so we want to get the diagnosis right.
Both the doctors and nurses that you meet in the Children’s and Young Persons epilepsy clinic have completed Paediatric Epilepsy Training. During this training they have learnt how to interpret videos.
- The team can tell if a child/young person is having a seizure.
- The team can identify the type of seizure.
- The team can try and identify the type of epilepsy the child/young person has.
We think it is possible to get video footage if seizures last for more than 20 seconds, or occur frequently, or at predictable times.
Seizures that are both very brief and very infrequent are rarely epileptic.
We really value video footage from schools and nurseries if the episodes are only occurring there. We know that most educational environments have policies in place which prevent the teachers from videoing their pupils, but we have found that ‘chair’s action’ by the Chair of Governors, on a named pupil basis, for the purpose of diagnosis, is usually adequate permission.
But how can I video during a seizure or a strange episode?
We understand that your priority is the safety of your child. However, it is very rare for a seizure to be dangerous within the first five minutes, and 98% of seizures finish within 5 minutes. There is very little that anyone needs to actively do within that time apart from get the video!
What do you need me to video?
We do not expect you to follow the child/young person with a camera ready in case they have a seizure but following tips may be helpful.
- If the seizures or episodes happen at a certain time of the day then ensure you have a video capturing device such as a camera, smart phone, tablet etc. available and fully charged with memory available.
- Once you know your child is safe then start to record the episode/seizure- it is great if you can catch the very start of the seizure, but any video is better than no video.
- Try to video the parts of the body involved and talk through what you are seeing working from head to toe, are they floppy or stiff?
- Do not try to focus on a colour change as this cannot always be seen when watching a video
- If you are capturing blank episode then call the child/young person and if they do not respond lightly stroke their face so that their reaction can be seen
- Videos can bring you good news that the episodes are not epileptic in nature
But my child has already had a diagnosis so why have I been asked to video?
Children’s and young people’s brains are constantly developing. If children/young people present with a different type of seizure then the team will want to identify if this is due to epilepsy or other reasons as detailed earlier.
If the child/young person was diagnosed a long time ago then the team may need to look into the episodes to decide if they are epileptic or not in order to adjust medication if required.
Remember if something is not broken we won’t try to fix it. Similarly with epilepsy if it’s not epileptic then we shouldn’t start a child/young person on treatment.
I have a video, so what now?
- Ask your epilepsy nurse specialist for a link for vcreate neuro
