The frustration of epilepsy . . .

Posted: November 6, 2010 in Epilepsy
Tags: , , , , , , ,

November is Epilepsy Awareness Month.  The goal this year is “Get Seizure Smart.”  In support of this effort the following is some information about epilepsy and some personal experiences with my son.

There are many types of seizures which are symptoms of epilepsy  Not everyone’s seizures are the same.  It was just recently that I realized that the different forms of seizures could be completely different things.  The best analogy is cancer; different types of cancer can be completely different from each other.  For example, breast cancer has completely different characteristics as lung cancer.  Well epilepsy is the same way.  I suspect this is why it is so hard to treat. 

 The international classification* of seizures is:

 Generalized Seizures

  • Absence seizures (formerly called petit mal)
  • Myoclonic seizures
  • Clonic seizures
  • Tonic seizures
  • Tonic clonic seizures (formerly called grand mal)
  • Atonic seizures (drop attacks)

Partial Seizures

A. Simple partial seizures (consciousness not impaired)

  • With motor symptoms
  • With sensory symptoms
  • With autonomic symptoms
  • With psychic symptoms

B. Complex partial seizures (with impaired consciousness)

  • Simple partial seizures followed by impairment of consciousness
  • With impairment of consciousness at seizure onset

C. Partial seizures evolving to secondarily generalized seizures

  • Simple partial secondarily generalized
  • Complex partial secondarily generalized
  • Simple partial evolving to complex partial evolving to generalized

 

For example, my son has several forms of seizures.  They include Simple Partial Seizures where he is totally aware of his surroundings as the seizures are occurring.  He has had Complex Partial Seizures where he was not conscious of what is happening.  Some of his seizures have been referred to as myoclonic seizures, which are generalized seizures with brief jerks of a part of the whole body.  His seizures have also been described as Jacksonian March seizures, which are seizures that start in one area, involving one specific muscle group, and then expanding (marching) to additional muscle groups.   These seizures can also be seen as normal movements.   They can occur at no particular moment and last only briefly. In my son’s case the seizures would begin with an eye blinking movement, which turned into head jerks, which turned into full body jerks.  We have also been told his seizures occur in his left frontal lobe.  These seizures would come in clusters which would consist of movements that would happen for brief seconds, pause, and then recur over and over again.  This could go on for 20 minutes and the time period between movements would increase as time went by.  The neurologist also indicated that some of my son’s seizures presented themselves with a fencing posture, which is common with frontal lobe epilepsy. Frontal lobe seizures are frequently mistaken for nonepileptic seizures as they do not necessarily impair consciousness.  Nonepileptic seizures are seizures that are not caused by abnormal brain electrical discharges.  We also have been told that my son has nonepileptic seizures. 

[Take a deep breath.]  The reason I am sharing this information with you  is so you can see how complicated epilepsy can be.  The terminology is confusing and it has changed over time.  A person can also have multiple forms of seizures.  Based on tests, neurologist see and conclude different things at different times.  This whole situation with my son gave me a different perspective of the medical community and how much they do know and how much they don’t know about the brain.  It is a big mystery.  As a result of this, treating epilepsy is a huge trial and error process.  Patients become guinea pigs.

My son’s seizures started when he was 3 ½ years old.  Arriving at a diagnosis took years.  His epilepsy was very unusual and we saw many, many different specialists for about four years.  His case had been presented at neurological conferences for the purpose of obtaining opinions. Over that period of time, my son was on numerous types of antiepileptic drugs, which were really scary drugs – drugs that potentially could have serious, permanent side affects.  In 2004, when my son was 6 years old he had a VNS (vagal nerve stimulator) implanted, which resulted in eliminating his most severe type of seizures.  It was not until 2006 that the neurologist ( this was clinic number four and neurologist number seven) tried a combination of medications that reduced the majority of my son’s remaining seizures.  So now instead of 10 times a day of having seizures, he may only have one or two seizures a month.

Epilepsy is a really tough condition.  Both the patient and their caretakers go through a roller coaster of emotions.  We have to invest the time to educate ourselves.  We invest the time to educate the individuals that interact with our child, such as teachers and school nurses.  We document every little thing that occurs, hoping that it will provide a clue.  We invest time. constantly looking for the next new treatment option or new medical discovery.  We wait, and wait for a cure.  Until then we are at the mercy of the condition, the pharmaceuticals, and the medical community.  It is very frustrating.

*Portions of this blog regarding the types of seizures is from the Epilepsy Foundation of America

 

 

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