Drug Resistant Epilepsy

Are you impacted by a condition known as drug resistant epilepsy? Welcome to the Matthew’s Friends website. We have designed our site to offer advice and information relating to drug resistant epilepsy, along with many other conditions, and how ketogenic diet therapy can be used to help treat this.

Seizures sometimes are not controlled with seizure medications. A number of different terms may be used to describe these including: “uncontrolled,” Drug Resistant Epilepsy “intractable,” “refractory,” or “drug resistant.” How often does this happen?

Studies suggest that epilepsy fails to come quickly under control with medicines in about one-third of cases, but the true frequency depends upon the definition of uncontrolled.
Most epilepsy specialists agree that refractory epilepsy is epilepsy for which seizures are frequent and severe enough, or the required therapy for them troublesome enough, to seriously interfere with quality of life.
However, in more recent years, the epilepsy community has recognized the need to continue striving for ‘no seizures’ and the best control possible.
The International League Against Epilepsy (ILAE) has proposed the following definition of drug resistant epilepsy and suggests that this term be used instead of the term ‘refractory epilepsy’.
Drug resistant epilepsy occurs when a person has failed to become (and stay) seizure free with adequate trials of two seizure medications (called AEDs).
These seizure medications must have been chosen appropriately for the person’s seizure type, tolerated by the person, and tried alone or together with other seizure medications.

For more information please click here.

Who Can The Ketogenic Diet Help Combat Drug Resistant Epilepsy?

The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control drug resistant epilepsy in children but can also be used to treat adults as well.

The ketogenic diet works by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain-function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies.

The ketogenic diet is a first-line treatment for the neurometabolic diseases glucose transporter type 1 (GLUT1) deficiency syndrome and pyruvate dehydrogenase (PDH) deficiency. Although clinical evidence is more limited, ketogenic therapy is also increasingly being explored as a treatment option for other disorders such as neurological cancers.

Whilst primarily targeting young sufferers of epilepsy, following and monitoring a strict ketogenic diet plan can also offer benefits for people suffering from a wide range of illnesses and conditions, including:

What Else Do You Need To Know?

Radically changing eating habits can be tough under any circumstances but ketogenic therapy is much more than this. It brings with it a new ‘responsibility’ for delivering the epilepsy treatment correctly, alongside a need for tracking of food intake and symptoms. Even with the best preparation, training and regular support from the ketogenic team, this can feel very time-consuming, obsessive and quite stressful in the early weeks. However, like learning any new skill, the whole process becomes very much easier in time and if symptoms start to improve, the sense of empowerment can be immense. Successful ketogenic therapy is a team effort with the individual at its centre. The level of involvement, understanding and support of family, close friends and any carers, can make such a difference to the ketogenic therapy experience and outcome.

For most adults, commitment to a three month trial of supervised ketogenic therapy is generally all that is required to indicate whether the impact on quality of life makes it worth pursuing longer term. When successful, the treatment may continue for two years or longer, depending on personal choice and keto team review. When unsuccessful, the ketogenic diet is weaned gradually as normal dietary choices are reintroduced.

If you would like to consider a trial of ketogenic therapy please speak to your neurologist, epilepsy nurse specialist or your GP in the first instance. They may be able to:

Refer you to a UK centre providing an adult ketogenic service. Currently:

The National Hospital for Neurology & Neurosurgery in London ( NHS)
Matthews Friends Clinics, Lingfield, Surrey.
The Barberry Centre, Birmingham.

Supervise this locally if they have access to a dietitian with ketogenic experience or are looking to undertake training and supervision to enable them to deliver this treatment locally

For more information about Matthew’s Friends and ketogenic dietary therapies designed to help combat drug resistant epilepsy, please take a moment to view the following YouTube channel:

https://www.youtube.com/user/MatthewsFriendsOrg/videos

Contact Us

If you would like any further information regarding an drug resistant epilepsy, please contact us on either Tel. No. 01342 836571, e-mail enqmatthewsfriends.org or via our official Facebook page and we will be happy to answer any of your questions.