When Two Epilepsy Medicines Fail, What Should Families Do Next?

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Counting seizures is the easy part. What families of children with drug-resistant epilepsy often notice is everything around the seizures: broken sleep, slipping school performance, changes in behaviour, milestones that arrive late. All of this plays out during some of the most important years of a child's development.

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When medicines stop working, the instinct is often to try another one and then another. But a growing view in paediatric neurology is that this is the moment to step back and look at the whole treatment strategy.

We spoke to Dr Ranjith Kumar Manokaran, Consultant Paediatric Neurologist and Epileptologist, who explained why Drug-Resistant Epilepsy (DRE) calls for a wider view, and what that view should include.

When Seizure Counts Tell Only Part of the Story

"For a child with drug-resistant epilepsy, seizure frequency tells only part of the story. Persistent seizures can affect sleep, learning, behaviour, development and quality of life, often during some of the most important years of a child's development," said Dr Manokaran.

How Drug-Resistant Epilepsy Is Recognised

On what counts as DRE, Dr Ranjith explains:

"Drug-resistant epilepsy (DRE) is recognised when two appropriately selected, tolerated and adequately dosed anti-seizure medications fail to achieve sustained seizure freedom. Recognising DRE should prompt a reassessment of the overall treatment strategy rather than simply continuing to change medicines without considering other appropriate options," explained Dr Manokaran.

What Comes After Two Medicines?

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Once DRE is recognised, the next step is a full evaluation. Once drug-resistant epilepsy is recognised, the child should be referred for comprehensive epilepsy evaluation. "This may include detailed review of the seizure history, video-EEG, epilepsy-protocol MRI, genetic or metabolic investigations when appropriate, and multidisciplinary assessment to determine whether epilepsy surgery, dietary therapy, neuromodulation or further medical treatment is most appropriate," added Dr Manokaran.

Medicines, he stresses, are not written off.

"Medicines continue to have an important role in DRE, and additional medication may still be appropriate in selected children. At the same time, depending on the epilepsy syndrome, underlying cause and clinical profile, a child may need evaluation for epilepsy surgery, neuromodulation or ketogenic dietary therapy (KDT)."

He adds that surgery and neuromodulation suit different situations.

"Epilepsy surgery may be considered when a well-defined seizure focus can be identified and safely treated. Neuromodulation may also be an option for selected children when surgery is not suitable or when seizures arise from areas that cannot be safely removed. These decisions require specialist assessment and should be individualised."

Ketogenic Therapy Is Not the 'Keto Diet'

Dr Ranjith describes the therapy this way:

"KDT is an established non-pharmacological treatment for selected children with difficult-to-control epilepsy. It uses a carefully prescribed high-fat, low-carbohydrate nutritional composition that alters the body's energy metabolism."

He is clear about one common confusion.

"Importantly, medical ketogenic therapy should not be confused with the popular 'keto diet'. It is a structured therapeutic intervention requiring careful nutritional planning and medical supervision."

The Practical Challenge of Ketogenic Therapy

For families, the hardest part is often sustaining the diet. "A major consideration in ketogenic therapy is maintaining the prescribed diet accurately and consistently over time. Traditional ketogenic diets require meals to be individually calculated, ingredients weighed and a prescribed ratio of fat to carbohydrate and protein maintained. This can require considerable involvement from caregivers," said Dr Manokaran.

Formula-based options can ease some of that load.

"Formula-based ketogenic diets provide another option in selected situations. Their standardised nutritional composition can help maintain the prescribed ketogenic ratio consistently and may simplify some calculations and preparation, particularly for infants, younger children or children receiving enteral feeds."

But he cautions against treating this as a default.

"This does not mean that formula-based therapy is preferable for every child. The choice of ketogenic approach should be individualised according to age, nutritional requirements, feeding method, epilepsy syndrome, clinical circumstances and the family's ability to sustain the treatment."

Treating the Child, Not Just the Seizures

Whichever route is chosen, follow-up matters. "Whichever approach is chosen, ketogenic therapy requires regular clinical and nutritional follow-up. Growth, nutritional adequacy, seizure response, gastrointestinal symptoms and potential adverse effects should be monitored by the neurologist, dietitian and multidisciplinary team," advised Dr Manokaran.

Bottomline

Dr Ranjith's larger message is that DRE is not a story of medicines failing altogether.

"The larger message in DRE is therefore not that medicines have failed altogether. It is that failure of two appropriate medication trials should prompt clinicians and families to consider the wider treatment pathway.

For some children, another medicine may still be appropriate. For others, surgery, neuromodulation or ketogenic dietary therapy may deserve consideration after comprehensive epilepsy evaluation.

"The aim is not simply to keep trying treatments until seizures improve. It is to identify the right treatment strategy early enough to protect a child's development, function and quality of life."

Disclaimer: The information provided in this article is for general informational and educational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or a qualified healthcare provider with any questions you may have regarding a medical condition.