Healthcare Spotlight: What you should know about Epilepsy

Epilepsy is a condition that affects many of the children that Tree of Hope support. We currently support 99 children who have epilepsy with their family’s fundraising efforts, including raiding money for medical interventions, alternative treatments and healthcare devices to help monitor symptoms. Interventions and treatment can be life changing for children, giving them freedom or relief from seizures, and the ability to live life in the same way as their peers.

According to NHS England¹, approximately 112,000 children and young people live with epilepsy in the UK. It is one of the most common long-term conditions for children and young people, yet there is no cure, and treatment is not as straight forward as some may think. This National Epilepsy week (Monday 19^th to Sunday 25^th May), we aim to raise awareness of the symptoms and available epilepsy treatments in the UK, also shining a light on drug-resistant epilepsy (DRE) which occurs in around one in three people with epilepsy²

What is Epilepsy?³
Epilepsy is a condition that affects the brain and causes recurring and unprovoked epileptic seizures. It is the fourth most common neurological disorder in the world, and whilst there is currently no cure, there are epilepsy treatments available in the UK that can often help manage symptoms.

Usually, the only symptom of epilepsy is having seizures, of which a person would typically become stiff or floppy, experience jerking or twitching movements, losing awareness of what is around. There are many different types of epileptic seizures which can affect people in different ways.

Types of epileptic seizure
The type of epileptic seizure varies from person to person: some may experience only one type, whilst others may have more than one. Here are how different types of seizures manifest themselves:

• Tonic Clonic Seizures – Muscles stiffen, the body jerks and shakes, and the person affected becomes unconscious and is at risk of falling.
• Tonic Seizures – Muscles stiffen meaning that the person may fall, however, people often recover quickly
• Atonic Seizures – Muscles suddenly go floppy but recovers quickly
• Absence Seizures – The person affected may briefly lose awareness of their surroundings
• Focal Seizures – This affects sensations, movements and feelings, which may be unusual
• Myoclonic Seizures – Muscles briefly jerk

For more information about the types of epileptic seizures, please visit Epilepsy Society: epileptic seizures

UK Treatments for Epilepsy
Treatment for epilepsy can take time to master, meaning that some people may need to try different types or variations of medication to ensure it works for them. Here are some of the ways that children can manage epileptic seizures.

• Medicines: The most common treatment for epilepsy is anti-seizure medicines (ASM) Each recommended medicine takes factors such as the type of seizure, age of the patient, sex and other medical complications into account.
• Alternatives: Cannabis-based medicinal products (CBMPs) which are prescribed by doctors to a limited number of patients who have rare or severe epilepsy
• Ketogenic diet: A high fat and low carbohydrate diet can be recommended for some people with epilepsy. Chemicals called ketones are made when the body uses fat for energy, and with a Keto diet, the body mostly uses ketones instead of glucose for its energy. A Ketogenic diet has reduced seizures for some people.⁵

Drug-Resistant epilepsy
Sadly, it is not uncommon for people to have Drug-Resistant epilepsy, where the patient has tried two or more ASMs, but their seizures continued. We spoke with Alex at Epsy, an organisation which helps people to understand epileptic treatment and how to manage seizures, through education.

If you want to know more about Drug-Resistant epilepsy, check out this helpful blog: https://www.epsyhealth.com/seizure-epilepsy-blog/have-you-heard-of-drug-resistant-epilepsy?

How Epilepsy affects our families
At Tree of Hope, we support 99 children with epilepsy, helping their families to raise funds for epileptic treatments, equipment or therapies which help manage their symptoms. We spoke to Alexander (AJ)’s mum, Zee, and Eddie’s mum, Ilmarie, about their experiences, from Epilepsy diagnosis, treatment and campaigning for awareness.

AJ’s Journey: Managing Myotonic Seizures and Finding the Right Epilepsy Treatment
AJ’s family came to Tree of Hope to fundraise for his healthcare needs. As well as Global Development Delay, AJ has epilepsy which has been a journey in itself for his family, in managing seizures and providing him with the correct epileptic medical treatment.

How AJ’s childhood epilepsy journey began:

• AJ began having Myotonic seizures in October 2021 and was experiencing more than 50 seizures each day.
• An EEG, MRI and a lumbar puncture procedure confirmed his diagnosis
• Whilst AJ was put on Anti-epilepsy medication, they sadly did not have any effect. Doctors believed that AJ’s Epilepsy management would be difficult and unpredictable.

Trialling anti-epilepsy medication:

• By the age of 2, AJ had trialled 4 different types of Anti-epilepsy medication, all with varying side-affects,
• After one year of trials, and a combination of anti-epilepsy medication and the Ketogenic diet, AJ found the correct dosage to manage epileptic seizures, giving him relief from childhood myotonic seizures, as well as a spark back on his face!

Support AJ’s epilepsy treatment fundraiser: https://www.treeofhope.org.uk/get-involved/childrens-campaigns/therapy-and-equipment-fundraising-for-alexander-san/

Eddie’s Story: The Fight for Access to Medical Cannabis for Epilepsy, a Mum's perspective
“When the law changed back in November 2018 to allow medical cannabis to be prescribed on the NHS we, along with the other families who had been campaigning for this change, allowed ourselves to believe that this meant our children would be able to get their medical cannabis prescribed. But the reality is very different, to this day it remains unavailable and even in the rare instances where doctors want to prescribe it, there is no route for them to do so.

And so, we are still campaigning. We also have to fundraise for the private prescription we are lucky enough to get. Because yes, for a few lucky families there is the option of a private prescription, albeit at a huge cost. For us, Eddie’s current prescription comes in at just under £2000 for 60 days.

Without a doubt one of the hardest things is trying to keep the conversation going, to keep focus on this issue, to make those who could effect change listen. It’s also hard to keep asking family and friends to support us by fundraising for epilepsy treatment, especially when the costs remain so high.

So, this week, for #nationalepilepsyweek we are asking you to keep listening, keep supporting and to keep sharing the stories of kids like Eddie. They deserve the chance to live the best lives they can!”

Ilmarie Braun, Eddie’s mum

Learn how to help Eddie access epilepsy medication: https://www.treeofhope.org.uk/get-involved/childrens-campaigns/edward-braun/

More information

At Tree of Hope, we’re committed to supporting families navigating complex conditions like epilepsy. From personalised fundraising support to advocacy for better access to treatments, we’re here to help every step of the way. Learn more about how we support children with epilepsy here: https://www.treeofhope.org.uk/support-for-parents/conditions/epilepsy/

References

¹ https://www.england.nhs.uk/long-read/national-bundle-of-care-for-children-and-young-people-with-epilepsy/#:~:text=Epilepsy%20is%20one%20of%20the,those%20in%20less%20deprived%20areas

²https://www.epsyhealth.com/seizure-epilepsy-blog/have-you-heard-of-drug-resistant-epilepsy

³ https://www.nhs.uk/conditions/epilepsy/

⁴ https://www.nhs.uk/conditions/medical-cannabis/

⁵ https://epilepsy-institute.org.uk/eri/about-epilepsy/treatment/