I am a single mom raising a son with autism. 21 years ago, I read "Autism: a permanent developmental disability requiring lifelong care for which there is no known cause or cure". In that moment my world crashed as I grieved for the life he would never live. This blog details our 21-year journey of grief, joy, disappointments, successes, lessons, strategies, personal challenges, frustrations, fears all as they unfolded- day by day.
Thursday, June 13, 2013
The ASD Epilepsy Connection - Part 2
Once again science is catching up with families living with Autism, and there's a lot of much needed confirmation in the medical world that will help families.
It is estimated that as many as 1/3 of individuals with autism spectrum disorder also have epilepsy. Epilepsy is a brain disorder marked by recurring seizures, or convulsions.
Experts propose that some of the brain abnormalities that are associated with autism may contribute to seizures. These abnormalities can cause changes in brain activity by disrupting neurons in the brain. Neurons are cells that process and transmit information and send signals to the rest of the body. So overloads or disturbances in the activity of these neurons can result in imbalances that cause seizures.
To learn more about how to recognize and treat epilepsy, visit the Treatments sectionof our What is Autism page.
Recognizing Epilepsy Symptoms
Seizures can begin at any age. Characteristic symptoms include:
· Unexplained staring spells
· Stiffening of muscles
· Involuntary jerking of limbs
· Facial twitching
· Unexplained confusion
· Severe headaches
Other less-specific symptoms can include:
· Sleepiness or sleep disturbances
· Marked and unexplained irritability or aggressiveness
· Regression in normal development
Types of Seizures
Like autism, epilepsy exists on a spectrum. Severity varies widely among people with epilepsy. There are several types of seizures, each with somewhat different symptoms:
· Tonic-clonic seizures are the most common. Also known as gran mal seizures, they produce muscle stiffening followed by jerking. Gran mal seizures also produce loss of consciousness.
· Absence seizures can be difficult to recognize. Also known as petit malseizures, they are marked by periods of unresponsiveness. The person may stare into space. He or she may or may not exhibit jerking or twitching.
· Tonic seizures involve muscle stiffening alone.
· Clonic seizures involve repeated jerking movements on both sides of the body.
· Myoclonic seizures involve jerking or twitching of the upper body, arms or legs.
· Atonic seizures involve sudden limpness, or loss of muscle tone. The person may fall or drop his or her head involuntarily.
Treatment of Epilepsy
If you suspect your loved one with autism may be having seizures, you will want to work with a neurologist that specializes in seizure disorders.
Most likely, the neurologist will order an electroencephalogram (EEG). An EEG is a noninvasive process that involves the placing of electrodes on an individual’s head in order to monitor activity in the brain. By analyzing the brain activity patterns that the EEG measures, the neurologist can determine if someone is having seizures.
After an epilepsy diagnosis, the doctor usually selects an anti-epileptic medication based on several considerations such as the type and severity of seizures and their associated EEG patterns. These drugs do not cure epilepsy. In most cases, however, they can prevent or minimize seizures. Right now, U.S. doctors can choose from more than twenty medications!
Epilepsy drugs eliminate seizures in around two-thirds of patients. More difficult-to-control cases sometimes respond to combinations of two or more medications. If medications fail to control seizures, you can discuss other options with your doctor. Some doctors suggest surgery to remove the part of the brain that is causing the seizures.
Others might recommend a so-called ketogenic diet. In this type of diet, each meal has about four times as much fat as protein or carbohydrate. This diet mimics starvation by burning fat for energy, rather than carbohydrates. Though doctors aren't sure why yet, ketogenic diets have been effective in controlling seizures for some patients. According to the Epilepsy Foundation, about a third of children who try the ketogenic diet become seizure free, or almost seizure free. Another third improve but still have some seizures. The rest either do not respond at all or find it too hard to continue with the diet, either because of side effects or because they can't tolerate the food. When trying this diet, it is critical that an individual is advised and monitored by an experienced nutrionist or medical professional.
SUDEP: Sudden Unexpected Death in Epilepsy
We know that the combination of autism and epilepsy is often associated with overall poor health, and in extreme circumstances, premature death. Though most neurologists and physicians choose to ignore this frightening topic, it is important to know that inrare occasions, epilepsy can be fatal. The incidence of Sudden Unexpected Death in Epilepsy (SUDEP) ranges in different studies from 0.9 – 93 cases per 10,000 people per year (Tomson et al. 2008).
SUDEP is more likely in people with uncontrolled grand mal seizures, or those who are having seizures but not taking adequate doses of antiepileptic medications. Causes include pauses in breathing, heart rhythm problems, brain dysfunction, or a mix of these. Click here to learn more information about SUDEP from epilepsy.com.
There are various strategies to help prevent SUDEP. Obviously, controlling seizures as much as possible is the best option. Finding the right medicines and ensuring that your loved one takes the proper dosage at the proper time is critical. There are lots of researchers and companies currently working on seizure monitors to notify caretakers when a seizure is beginning. There are currently some seizure monitors that families have found helpful as the monitors are able to alert them when a seizure is occurring or about to occur.