I’d Like a Cocktail Please
Sometimes Epilepsy is treatable. Even when it’s not, people go to great lengths to reduce the number of seizures they may have. The goal of any treatment is to achieve the greatest amount of seizure control with minimal side effects. Let’s take a look at the options:
AEDs – or Antiepileptic Drugs. There are lots of them. Sometimes conquering seizures requires a drug cocktail. Specific drugs work on specific seizure types. If the first few drugs or drug cocktails haven’t worked, there’s a decreased chance that others will work. They’re not to be messed with since one of the precipitating factors to a seizure can be not taking your meds exactly as prescribed. Aidan was on Depakote, Zonegran, and Keppra, none of which reduced his seizures and all turned him into a zombie. With that information, we took him off of medication completely.
Diet – The Ketogenic Diet, Modified Atkins Diet, and Low Glycemic Index diet have been well researched and have been shown to reduce seizures. In a nutshell, your body burns sugar, then fat, then muscle. If you take away or drastically reduce sugar (glucose/carbohydrate) intake, the body will burn fat. You want to continue to feed the body fat so it doesn’t progress to burning muscle. That stage of burning fat is called ketosis and for unknown reasons has been shown to reduce seizures in some people. This is a medical treatment, not a fad diet nor a hippie alternative treatment, and requires proper medical supervision. Please read here for comparative information about the three diets.
Aidan was on the Modified Atkins diet. While it required diligence and counting carbs in the beginning, it was easy to adjust to. He ate lots of chicken and tune doused with tons of mayonnaise or sour cream with real whipped cream and nuts for dessert. While it initially seemed to decrease his seizures, that didn’t last and we took him off the diet.
VNS – Vagus Nerve Stimulation has sometimes been called a “pacemaker for the brain.” It’s a device that’s implanted in the left side of the chest with leads that wrap around the vagus nerve in the neck. It sends pulses of electrical energy to the brain to stop seizures. It works at specific settings but if a person feels a seizure coming on, a special magnet can be held near the device to stop the seizure.
ACTH – This is a steroid hormone injection. Children with Infantile Spasms or West Syndrome can be treated with this injection. It’s given 1-2 times per day over the period of approximately 3 months. Because it’s given regularly, parents are taught how to inject their babies so they can remain at home. You’ll soon meet my friend Danielle and hear about her experience with her son.
Surgery – Epilepsy surgery either removes or isolates the part of your brain where your seizures originate. If the words “vegetable” or “catatonic” or “lobotomy” are coming to mind, dismiss them immediately. Remember that Tara had surgery to treat her Epilepsy. Surgery is generally considered for people with retractable/catastrophic/uncontrollable seizures where the continued risk (to life or cognitive development) of having seizures is greater than the risk of brain surgery.
Much of the time people are using a combination of treatments. To help raise awareness with the hopes of eliminating seizures, their side effects, and the need for costly, risky treatments, please share this post.