Understanding

>> Wednesday, June 10, 2009

I find that when most people hear: He has seizures. The first thing they ask is: Does he have Epilepsy?

Simply put, Epilepsy is the occurrence of more than one episode. People get caught up on the Epilepsy label when really, the label is an umbrella term for a lot of different neurological events. Any Doctor will call it Epilepsy if the patient, or in our case, the patients advocate, declares that more than one event has occurred.

People talk about a 'Diagnosis of Epilepsy', but, that is the easy part. Finding out the TYPE of Epilepsy is the same dog, different spots. With Epilepsy, the spots spell out the breed. The location of the spots, how dark they are, or how light they are, all tell where, in the brain, is the epicenter for the seizure

Bug's spots were never seen before this last EEG. His Epilepsy is curious, he has had EVERY type of seizures that a person can have. He has NO known triggers, there is NO family history. He has fabulous bilateral strength and motion. He can use his right or his left hand. He runs well and can kick a ball while doing it. He has the balance and reflexes of a fighter pilot. One CAN NOT get the child dizzy. He has spun in a circle for as long as I can remember and yet, I have never seen him dizzy. Neurologically, aside from the seizures and lack of speech, he is exceptional.

AND yet, he has NO sense of ICKIE. Things that would gross most people out...Bug will eat if we let him. He is pretty.

It was the notice of how lovely he is that made more than a couple Doctor's think Fragile X. This is one that would not really surprise me but it would be atypical given his symptoms. For the most part, all known types of Epilepsy are atypical in Bug. With as profound as his events are, he has no outward appearance of any type of neurological impairment. This is the hardest part. He looks completely perfect, but he isn't exactly.

Because of his physical appearances, getting those seizures on EEG were the most important thing that we could have captured. And that makes tomorrow...nerve-wracking! Downright sick-to-my-stomach nerves. Tomorrow, we may have the understanding of what is happening with him, or at least what part of his brain is overreacting or malfunctioning. If not, we go back to blood work and genetic screening and over analyzing his almost perfect simian line on both hands. No one else in the family has that. Makes him super special.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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