by Danielle Dunn
When your child first presents with seizures you will be seen by emergency doctors if you go to the hospital with troublesome seizures or your GP if you go to your local doctor with more subtle seizures. The job of the first round of doctors is to determine whether they are true epileptic seizures or not and use emergency medication to stop the seizures if they are life threatening.
If the seizures are likely to be epileptic the next step is to refer the child to a paediatrician who will order tests like an EEG (brain wave test) and MRI (brain scan). If the paediatrician is able to diagnose the type of epilepsy from the test results, the child responds to antiepileptic medication promptly, there are no other associated problems like developmental delay and the child is over 3 years of age then no further referrals are needed.
A paediatric neurologist becomes involved if the paediatrician is unable to diagnose the type of epilepsy, there are unusual findings on the MRI, there are developmental problems, the child is less than 3 years of age or the child is not responding promptly to antiepileptic medication. Further details explaining the referral pathway for epilepsy are found at: https://www.starship.org.nz/media/547624/epilepsy-guideline-2017-.pdf
Starting Point: Antiepileptic drug trials under the care of a paediatrician
- To make sense of the epilepsy management pathway it is useful to bear in mind that no one can predict exactly what management plan will work best for your child. It is a trial and error process. Antiepileptic medications are effective at controlling the seizures for 70% of children and as this is the majority that is is reason why medications are trialed first. Medications are usually started at a low dose rate and increased gradually to effect.
- There is a lot of research to show that 50% of children will respond to the first antiepileptic medication trial and another 20% will respond to the second antiepileptic medication trial. So that adds up to 70% of children responding to the first two antiepileptic medication trials. If you are in this category and your child is tolerating the medication well that is fantastic!
- Things change once you get up to the third and subsequent trials. Once a child has failed to gain seizure control after trialing two appropriate (correct type of drug for the seizure type and adequate dose) antiepileptic medications then the chance of a third and further trials being of benefit falls to 3% at best. Combining medications improves the response rate slightly to 5%.
- If your child has frequent or prolonged seizures you may be prescribed a rescue medication to have on hand at all times. This medication will act quickly to stop a seizure while you seek medical assistance. It is important you carry this with your child at all times and all carers of your child are familiar with the protocol on how to administer it.
Next Step: Paediatric Neurologist referral
If your child's seizures have not stopped after two medication trials or they fit the referral criteria mentioned earlier, then they are a candidate for a paediatric neurologist referral.
Ensure you are referred to see a paediatric neurologist if you are in this situation and ask your neurologist what the next step is. There are around 20 different epilepsy medications available and even with all the new medications released in the last few decades there has been no improvement in the 30% non responder rate. Further management options available through a neurologist are listed below:
- Your neurologist will determine from the diagnostic procedures whether your child would benefit from an early surgical referral.
- If the cause of the epilepsy can be pin pointed to a localised part of the brain which is not vital for other bodily functions then this part of the brain may be able to be removed. This type of surgery can be very successful in some cases in reducing seizures.
Ketogenic Dietary Therapy
The ketogenic diet is an extremely high fat, adequate protein, low carbohydrate eating plan which is highly tailored to the individual child's situation. The diet works by forcing the brain to be fueled by fat rather than sugar. Running on fat is a more efficient and stable way to operate the brain.
50% of children who trial a ketogenic diet will have their seizures reduced by at least a half. This success rate is much higher than the 3-5% success rate of further medication trials in a child who has failed to gain seizure control after trialing two antiepileptic medications.
Other benefits of the ketogenic diet include increased alertness and cognition, reduced seizure intensity and faster recovery and in some cases the ability to reduce antiepileptic medication doses.
A diet trial is carried out for 3 months. If the child responds well to the diet trial, the diet is carried out for 2 or more years then the child is gradually weaned to a less restricted form of the diet or in some cases back to their original diet depending on seizure control.
Ketogenic therapy is dangerous to attempt unsupervised as the diet is highly unbalanced and carries a range of side effects if not managed correctly. When performed under the guidance of a specialised dietitian and neurologist trained in nutrition for epilepsy it is safe and well tolerated.
Think of the ketogenic diet as a personalised medicine formulated specifically for your child. It is not just another food craze, it is an evidence based treatment which has been around for 100 years. It can be helpful to refer to the ketogenic diet as a 'therapy' rather than a 'diet'.
Currently publicly funded access for ketogenic therapy is only available for children in Christchurch DHB or through a Starship referral. Various groups are lobbying for equal access to ketogenic therapy nationwide. If your child meets the criteria for a ketogenic diet trial and you are not fully informed about this option or offered a diet trial then you could make a complaint to pressure your DHB to meet best practice management guidelines for epilepsy.
Ketogenic dietitian support is also available privately. Have a chat to specialist ketogenic dietitian, Charlene Tan-Smith at https://ketogenicdiettherapy.co.nz/contact to find out more details.
CBD oil (Cannabidiol oil)
Cannabidiol is a therapeutic substance in medical marijuana that has been reported to assist with various health problems including seizure control. It is refined so it is very low in tetrahydrocannabinol (THC) which is the substance that causes the psychoactive effects of 'getting high'.
The use of CBD oil in epilepsy is an emerging field that is starting to gain momentum as more studies are published showing its efficacy and funding being approved in some countries for its use in certain situations.
Currently Tilray CBD can be prescribed in NZ but it is not funded by Pharmac. The weekly cost of purchasing the oil is over $1000 which makes it inaccessible for many families. The cost increases as the child gets older as the dose increases. There are groups lobbying the government and raising awareness with media to make this medication more affordable.
There are plans to start producing CBD oil commercially in New Zealand if current regulations change and there have been some small CBD medical trials in New Zealand.
CBD oil is often used alongside other antiepileptic medications. It's interactions with other medications or with Ketogenic Dietary Therapy are not fully understood.
Trials are showing evidence in one particular rare epilepsy type. More international trials are underway. Until more trials are completed, very little strong supporting evidence exists for other epilepsy types.
Any medication should ONLY be prescribed by a Paediatric Neurologist, with particular consideration for growing and developing children's brains.
Vagus nerve stimulator (VNS)
A VNS is a small electrical device like a pacemaker that is surgically inserted over the vagus nerve near the collar bone. It sends out regular electrical impulses to stimulate the vagus nerve which over time reduces the length, frequency and severity of seizures by calming irregular electrical brain activity. It can take up to two years to take effect.
A VNS is used in conjunction with antiepileptic medication. If the VNS works well then the dose of antiepileptic medication may be able to be reduced.
The VNS is not readily available in NZ and it can be difficult to access funding for it.
- Know your child's triggers. Sleep deprivation, stress and illness are common reasons for breakthrough seizures. Aiming for good sleep and a healthy lifestyle helps to increase your child's resilience against seizures.
- Music can help. Multiple studies show Mozart's Sonata for two pianos in D major (K448) has an anti epileptic effect demonstrated on EEG. Google 'the Mozart effect for epilepsy' to find out more.