On August 7th, 2007, my 14-year-old son Joey was swimming underwater at his grandparents' subdivision pool. When his grandmother noticed he had remained in one spot for several minutes, she swam over to him, nudged him, and receiving no response, turned him over and lifted his face out of the water.
He was blue and motionless. She thought he was dead.
Luckily, his 74-year-old grandmother is a retired emergency room nurse. Although she couldn't lift him completely out of the water, she pulled him over to the steps and was able to get him breathing. Then she screamed for help, alerting a neighbor who was in a nearby weight room. The man pulled my son out of the water and called 911. He then drove Joey's grandparents to Arnold Palmer Hospital for Children, where Joey was rushed by ambulance, and where he remained unconscious.
Joey was unconscious for almost 24 hours. When he came to at 3:00 AM the next morning, he asked, "Mom, where am I?" All he could remember was swimming underwater and then waking up at the hospital.
The doctors had no explanation for what happened to Joey. They suggested that perhaps he had fainted while holding his breath for too long underwater. This phenomenon is often referred to as shallow water drowning, when a person hyperventilates to hold his breath for as long as possible and then passes out. Many deaths of strong swimmers have been attributed to this.
One doctor at the hospital asked if Joey had a history of seizures. We all told him "No."
Since then, Joey has visited numerous doctors (pediatrician, neurologist, endocrinologist) and has been poked and prodded and subjected to many brain scan M.R.I.s, E.E.G.s, and blood tests.
From the results of the E.E.G., the pediatric neurologist determined my son was indeed having Absence Seizures from Generalized Epilepsy, and may have been having them for quite a while.
(The previous school year, in 8th grade, Joey's grades had dropped dramatically, and his teachers had complained of his constant daydreaming. One had remarked that it was as if he "wasn't even there.")
For several years, teachers had hinted at Joey's lack of focus or possible ADD or ADHD.
Now, we learned he had Epilepsy, and all of us were in shock...especially Joey. In retrospect, we should have realized there may have been a physical reason for Joey's lack of focus on his classwork...that it was not attributed to day dreaming, adolescence, lack of discipline, or plain laziness.
The following videos are about Epilepsy. The first shows an example of the Absence Seizure, or "staring spell" that used to be referred to as Petite Mal Seizure.
In the second video, a 19-year-old young man explains Epilepsy and speaks out against prejudice and ridicule used against people with Epilepsy.
The third video is a response to the second one, where a 15-year-old boy, wise beyond his years, speaks about his mother's Epilepsy and advises on the importance of education and sensitivity to this illness, especially in the classroom.
There are many different types of seizures. People may experience just one type or more than one. The kind of seizure a person has depends on which part and how much of the brain is affected by the electrical disturbance that produces seizures. Experts divide seizures into generalized seizures (absence, atonic, tonic-clonic, myoclonic), partial (simple and complex) seizures, nonepileptic seizures and status epilepticus.
Generalized seizures affect both cerebral hemispheres (sides of the brain) from the beginning of the seizure. They produce loss of consciousness, either briefly or for a longer period of time, and are sub-categorized into several major types: generalized tonic clonic; myoclonic; absence; and atonic.
Postictal (post-seizure) Symptoms
Absence (petit mal seizure)
2 to 15 seconds
Stare Eyes fluttering Automatisms (such as lip smacking, picking at clothes, fumbling) if prolonged
Amnesia for seizure events No confusion Promptly resumes activity
Generalized Tonic-Clonic (grand mal)
1 to 2 minutes
A cry Fall Tonicity (rigidity) Clonicity (jerking) May have cyanosis (bluish discoloration of the skin and mucous membranes from lack of oxygen)
Amnesia for seizure events Confusion Deep sleep
Generalized tonic clonic seizures (grand mal seizures) are the most common and best known type of generalized seizure. They begin with stiffening of the limbs (the tonic phase), followed by jerking of the limbs and face (the clonic phase).
Myoclonic seizures are rapid, brief contractions of bodily muscles, which usually occur at the same time on both sides of the body. Occasionally, they involve one arm or a foot. People usually think of them as sudden jerks or clumsiness. A variant of the experience, common to many people who do not have epilepsy, is the sudden jerk of a foot during sleep. First aid is usually not needed, however, a person having a myoclonic seizure for the first time should receive a thorough medical evaluation.
Atonic seizures produce an abrupt loss of muscle tone. Other names for this type of seizure include drop attacks, astatic or akinetic seizures. They produce head drops, loss of posture, or sudden collapse. Because they are so abrupt, without any warning, and because the people who experience them fall with force, atonic seizures can result in injuries to the head and face. Protective headgear is sometimes used by children and adults; the seizures tend to be resistant to drug therapy. No first aid is needed (unless there is injury from the fall), but if this is a first atonic seizure, the child should be given a thorough medical evaluation.
Absence seizures (Joey's diagnosis, also called "petit mal seizures") are lapses of awareness, sometimes with staring, that begin and end abruptly, lasting only a few seconds. There is no warning and no after-effect. More common in children than in adults, absence seizures are frequently so brief that they escape detection, even if the child is experiencing 50 to 100 attacks daily. They may occur for several months before a child is sent for a medical evaluation.
Infantile Spasms are clusters of quick, sudden movements that start between 3 months and two years. If a child is sitting up, the head will fall forward, and the arms will flex forward. If lying down, the knees will be drawn up, with arms and head flexed forward as if the baby is reaching for support. What to Do: No first aid, but doctor should be consulted.
In partial seizures the electrical disturbance is limited to a specific area of one cerebral hemisphere (side of the brain). Partial seizures are subdivided into simple partial seizures (in which consciousness is retained); and complex partial seizures (in which consciousness is impaired or lost). Partial seizures may spread to cause a generalized seizure, in which case the classification category is partial seizures secondarily generalized.
Partial seizures are the most common type of seizure experienced by people with epilepsy. Virtually any movement, sensory, or emotional symptom can occur as part of a partial seizure, including complex visual or auditory hallucinations.
Postictal (post-seizure) Symptoms
No loss of consciousness. Sudden jerking sensory phenomena
Possible transient weakness or loss of sensation
1 to 2 minutes
May have aura Automatisms (such as lip smacking, picking at clothes, fumbling) Unaware of environment May wander
Amnesia for seizure events Mild to moderate confusion sleepy
Key Things to Remember about Partial Seizures
Although partial seizures affect different physical, emotional, or sensory functions of the brain, they have some things in common:
They don't last long. Most last only a minute or two, although people may be confused and need a lot more time afterwards to recover fully.
They end naturally. Except in rare cases, the brain has its own way of bringing the seizure safely to an end after a minute or two.
You can't stop them. In an emergency, doctors may use drugs to bring a lengthy, non-stop seizure to an end. However, the average person should wait for the seizure to run its course and try to protect the person from harm while consciousness is clouded. People who have been shown how to use a Vagus Nerve Stimulator (VNS) magnet may try to stop a partial seizure in that way.
They are not dangerous to others. The movements produced by a seizure are almost always too vague, too unorganized and too confused to threaten the safety of anyone else.
Nonepileptic seizures are episodes that briefly change a person's behavior and often look like epileptic seizures. The person having nonepileptic seizures may have internal sensations that resemble those felt during an epileptic seizure. The difference in these two kinds of episodes is often hard to recognize by just watching the event, even by trained medical personnel.
But there is an important difference. Epileptic seizures are caused by abnormal electrical changes in the brain and, in particular, in its outer layer, called the cortex. Nonepileptic seizures are not caused by electrical disruptions in the brain.
Most seizures end after a few moments or a few minutes. If seizures are prolonged, or occur in a series, there is an increased risk of status epilepticus. The term literally means a continuous state of seizure.
Currently, Joey is taking Keppra (soon to be weaned off) and Lamictal (soon to be increased). This year, he is back on the Honor Roll.
There is also a suppository medication, Diastat, at his school, his dad's home, my home, and his grandparents' home in case Joey were to have a seizure lasting longer than three minutes. If he were to have a seizure lasting longer than five minutes, paramedics must be called.
Joey is restricted from lifting weights, climbing, swimming, or riding his bicycle without strict supervision. He was also told he cannot drive or attempt to get his driver's permit for at least two years, until it is determined that his Epilepsy can be controlled by medication.
However, Joey was also warned that he may never be able to drive in his lifetime...not an easy fact for an adolescent to accept. He is also restricted to playing video games for just a 1/2 hour per day. Worst of all, Joey is also limited to the amount of time he can spend on his precious computer.
These days, Joey is sometimes sad and angry. In a moment of exasperation he even exclaimed, "I should have drowned in that pool!"
A self-proclaimed "geek," after high school Joey's dream is to attend Rensselaer Polytechnic Institute (RPI) in Troy, New York. He wants to be a software engineer.
Since the age of 11, Joey has been creating websites, building PCs from scratch, and networking all the computers in our home. He even gets paid to update the website for his grandparents' Orchid Club.
Yet at 14, the age where most kids are gaining independence, Joey feels he's being severely restricted and supervised. Despite his medication, he is still experiencing occasional Absence seizures in class, and so I've notified his school nurse, counselor, and teachers.
His medications make him tired, but his fatigue is compounded by the 7:15 AM high school start time and 6:15 AM bus.
It's important that Joey know he's not alone; there are successful and even famous people in the world, both in history and currently living, and thriving, with Epilepsy.
Julius Caesar - Roman Statesman (100-44 B.C.) Napoleon Bonaparte - Emperor of France (1769-1821)
Joan of Arc, or Jeanne d'Arc in French, (1412 – May 30, 1431),
15th century national heroine of France.
Tried and executed for heresy at 19 years old.
Judgment broken by the Pope and declared innocent/martyr 24 years later.
Beatified in 1909 and canonized as a saint in 1920.
Vincent Willem van Gogh (30 March 1853 – 29 July 1890),
Dutch Post-Impressionist artist.
St. Valentine is the Patron Saint of Epilepsy
I am encouraging and supporting his dream of becoming a software engineer/computer programmer. I want him to learn to take care of himself while living as "normal" a life as possible.
Our biggest concern right now is his upcoming visit to yet another specialist.
The results of his most recent M.R.I. brain scan showed a malformed pituitary gland. His neurologist could not determine if Joey has a birth defect or a small growth or tumor, possibly an Adenoma (a benign tumor).
Upon learning this latest bit of news, Joey told me, "Mom, if I have a brain tumor, I'll be pissed!"
He then added that he would never permit anyone to operate on his brain.
Joey has since been diagnosed with having a Pituitary Adenoma.
His dad, brother, grandparents, and all of Joey's extended family were surprised at Joey's diagnosis of both Epilepsy
and Pituitary Tumor, but are all offering support and working with his doctors to keep him healthy.
The following websites and support forums have been very helpful: