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Information about seizures.

Our son Nick has epilepsy.  He has an epilepsy syndrome called Lennox Gastaut Syndrome, or LGS.  It is a type of epilepsy with multiple different types of seizures that begins in childhood.  The seizures are hard to control and require life-long treatment.  Intellectual and behavioral problems add to the difficulty of managing life with LGS.

A few people have mentioned that they wouldn’t know what to do if they saw someone having a seizure.  What most people envision when they think of a seizure is called a tonic clonic seizure.  They have previously been known as grand mal seizures.  It can be pretty dramatic.  A person will drop to the ground, their body thrashing and jerking, skin color is blue gray and often they lose bladder and bowel control. Typically they are short lived, lasting less than two minutes, although seizures can cluster, which means that the individual will have repeating seizures with a period of time in-between them.

My recommendation is that if you see someone who is behaving erratically and they don’t have someone with them, acting as a caregiver, call emergency medical care immediately.  They might be having a seizure, even it if doesn’t look like what you typically think of as seizures.  Please don’t ignore them and walk away, they might need medical attention.

If they are wandering around, talk calmly to the person and stay with them while helping to steer them away from dangerous situations.

If they have fallen to the ground and are having a tonic-clonic seizure, do the following while waiting for the medical personnel.  Clear the area around the person of furniture or other sharp edged items.  If possible try to turn the person onto their side with their mouth pointing towards the ground.  DON’T PUT ANYTHING IN THEIR MOUTH! Don’t worry – a person can’t swallow their tongue during a seizure.  This is a false rumor.  DON’T FORCIBLY HOLD THE PERSON DOWN.  Restraining a person can lead to injuries.

A seizure is a sudden surge of electrical activity in the brain which usually affects how a person appears or acts for a short time.  There are three main categories of seizures.  I have included the descriptions from the website www.epilepsy.com.

Many different symptoms happen during a seizure. This new classification separates them simply into groups that involve movement.

For generalized onset seizures:

  • Motor symptoms may include sustained rhythmical jerking movements (clonic), muscles becoming weak or limp (atonic), muscles becoming tense or rigid (tonic), brief muscle twitching (myoclonus), or epileptic spasms (body flexes and extends repeatedly).
  • Non-motor symptoms are usually called absence seizures. These can be typical or atypical absence seizures (staring spells). Absence seizures can also have brief twitches (myoclonus) that can affect a specific part of the body or just the eyelids.

For focal onset seizures:

  • Motor symptoms may also include jerking (clonic), muscles becoming limp or weak (atonic), tense or rigid muscles (tonic), brief muscle twitching (myoclonus), or epileptic spasms. There may also be automatisms or repeated automatic movements, like clapping or rubbing of hands, lipsmacking or chewing, or running.
  • Non-motor symptoms: Examples of symptoms that don’t affect movement could be changes in sensation, emotions, thinking or cognition, autonomic functions (such as gastrointestinal sensations, waves of heat or cold, goosebumps, heart racing, etc.), or lack of movement (called behavior arrest).

For unknown onset seizures:

  • Motor seizures are described as either tonic-clonic or epileptic spasms.
  • Non-motor seizures usually include a behavior arrest. This means that movement stops – the person may just stare and not make any other movements.

I have been extremely grateful for those people who have approached us, and asked what they could do to help, when Nick is seizing.  Sometimes there is nothing that we need, at other times we have needed assistance.  Those of us who are experienced in caring for someone with seizures will know when medical intervention is necessary.

A few times, people have decided to call for medical assistance, even when we said that there was no need.  Unfortunately this is not helpful.  Not only is it an unnecessary use of public funds, it takes our attention away from managing our sons seizures while we have to assure the medics that we know how to handle the situation.

If you are interested in any further information you can check out Epilepsy.com.  They have a wonderful website with lots of information.

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Announcing that I have finished a book with the working title of “The Fairy Fort.” I am currently pitching it to publishers. Keep checking back to watch the progress of my newest novel.

Here is a quick glimpse of the story.

Sarah Doherty is an 18-year-old living in rural Ireland at the tail end of the Great War. Plagued by severe epilepsy, she is protected by her parents and lives a sheltered, secluded, lonely life. The Fae, local Irish fairies, interfere with her life. She falls forward a century in time through the local fairy fort of standing stones. She had a seizure in 1918 and woke up in 2020. The 21st century world includes life-saving prescriptions, physical comforts and the independence and freedom she seeks. The locals are welcoming and Andy Mclaughlin, a handsome young historian, is intriguing. She doesn’t want to return home.

Then a letter arrives from Boston divulging the story of Sarah and Andy’s lives that are deeply entwined in the previous century. They are not yet in love but as they seek to verify the letter through online resources, they feel a growing obligation to their unborn family and to each other. What would happen to their posterity living in Boston if they don’t return to 1918? Even if they do make it back, her parents can never know what happened to her or that would change everything.

This Young Adult time-travel romance explores the question: Do we have the freedom to make choices or is free will an elaborate illusion?

This is my third book. I love reading time travel romances. I am an advocate for epilepsy awareness because my 43-year-old son has intractable epilepsy. As a genealogist specializing in Irish research, I live part of the year in the village where the story is based. I wrote the book to help young adults understand that difficult situations can change your life. Sometimes miraculously.