How is CHD2 treated?

The most common treatment for CHD2 disorders is anti-epileptic drugs (AEDs). There are many different AEDs available but there is no particular one that is known to be more effective than others: it depends upon the individual response to the drug, and often a combination of drugs is required. However, CHD2 is known as a “refractory” epilepsy, meaning that it is very difficult to control. Some AEDs have no effect at all or can even make the condition worse, but it is usually a matter of trial and error to determine what works and what does not. This can be a difficult and frustrating process since AEDS commonly need to be slowly weaned in; and then slowly weaned out if they are ineffective.

Medication
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AEDs

Common AEDs include:

  • Sodium valproate (usually under the brand name Epilim) is usually the first AED attempted with most epilepsies in the UK. Note: sodium valproate should not be taken by anyone who is pregnant.
  • Lamotrigine – usually known as Lamictal.
  • Levitiracetam – brand names include Keppra.
  • Topirimate – also known as Topamax.
  • Lacosamide – often known as Vimpat.
  • Clobazam – brand names include Frisium.
  • Clonazepam
  • Cenobomate – known also as Ontozry.
  • Zonisamide.

And there are many others also. We will add more information about these as we develop the website further. You can also find a fuller list at the Epilepsy Society website.

Ketogenic diet

When AEDs have been found to be ineffective, the ketogenic diet is another type of treatment for epilepsy. The ketogenic diet is a high-fat, low-carb regime, aiming to bring on a state of ketosis, where the body burns fat for its energy rather than sugars (carbs). The ketogenic diet can be highly effective in reducing seizures for some people, but it requires a lot of commitment and time and does not suit everybody. It is easier to do the diet now than it was, say, fifteen or twenty years ago as there are a lot more pre-made keto products available on prescription. Even so, some will find the diet unpalatable and not be able to tolerate it.

There is still some debate over why the ketogenic diet works in reducing seizures, whether it is as a result of the presence of ketones (produced by burning fat), or the absence of sugars/carbs. Nevertheless, clinical trials have proved its effectiveness and is certainly worth considering when AEDs do not produce positive results.

Vagus nerve stimulation (VNS)

Again when AEDs prove to be ineffective, VNS is sometimes suggested as an alternative, or sometimes in combinations with AEDs.

A small device is inserted below the skin and attached to the vagus nerve in the neck. The device is programmed to send small electrical signals through the vagus nerve on a regular basis to try to reduce the irregular electircla activity in the brain that leads to seizures.

VNS does not generally remove seizures entirely but will often reduce their frequency and intensity. VNS therapy is usually offered only once AEDs have failed to work, but not everyone is suitable for a VNS. For instance, someone who has sensory issues or autism may find the device unpleasant or distressing since there is a visible, tangible lump under the skin where it sits.