We sure had some excitement today! Our son David had a FLURRY of break-through seizures this morning while he was attending UCP-Birmingham's LINCPoint day hab program. This led to a trip to the ER, as his seizures continued one after the other. His break-through seizures occurred in the process of our neurologist's attempts to manage his many seizure medications.
People who have seizure disorders or epilepsy depend upon medications to increase the threshold at which their seizures occur. Everyone's threshold is different, and everyone's seizure disorder is different. Most neurologists aim to: achieve the least number of seizures ... using the least amount of medicine ...with the least amount of side effects, including loss of alertness or sedation.
This is the direction our neurologist was going when we were told to reduce a drug that turned out to be a necessity for our son. Balancing seizure medications is a very complicated task, especially when you factor in that every person's chemical makeup is different, and their reactions to changes in medications vary so drastically. The tenacity with which our son's personal seizure disorder "sticks in there" also makes the balancing of the goals of fewer seizures, least amount of drugs and side effects VERY difficult. It has always been this way for him, ever since the onset of seizures at 7.5 months of age.
David's seizures today were complex-partial, which is the typical presentation of seizures for him... one part of his body jerks rhythmically while he loses most of his consciousness. It's not pretty. Over the years he has had multiple types of seizures, and has had more seizures than we cared to keep a count of since they topped 3500 back in 1990. They occur MUCH less frequently nowadays, ever since the FDA gave approval in the early 90's for more drug studies in children with epilepsy. Without those "new" drugs, many of which included our son David in their drug studies, David's life would be an entirely different picture. We are SO THANKFUL that the pharmaceutical companies were given opportunity to prove that there were drugs that could help children with seizure disorders. And those same drugs were first made available to the adult population - one which David has now joined.
Life with a child with an intractable(uncontrollable) seizure disorder is never boring, but of course has its ups and downs. Today was definitely not boring... yet our son made it through the overwhelming challenges yet again. He is recovering. What a trooper!
Throughout his life, our son's experiences have pointed out the ways in which the rest of us are really the disabled ones. How many of us could constantly get up and face everyday peacefully and even cheerfully if we had these seizures to deal with? How many of us (who consider ourselves normal) could remain as calm toward those who make remarks or judgment calls toward us because of our differences? How many of us... the questions go on and on endlessly in my head. Whose accomplishments are the greatest - those of a person with much physical strength and mental power... or those with very much less? Can we really view ourselves as better because we can achieve more or "bigger" things... when persons with special needs put forth so very much energy in just achieving the taking of a breath, or the whisper of a word, or the completion of another difficult task. Are any us, deemed to be "normal", proving ourselves to be anything MORE than ... lazy, irresponsible, or ... disabled ?? I think we have a LOT to learn from those we label as disabled.
So today marks another chance for a new beginning. Let's begin today as one who is responsible, as one who is not lazy, as one who makes the most of every opportunity.
"From everyone who has been given much,
much will be required."
much will be required."
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