July 5, 2011 - the day everything changed


Ben at the 4th of July parade.


My best friend, Angie called me and invited us to go to Chuck E Cheese with her and Nathan.  I waited to tell Ben until after his nap and he was thrilled!  There were many toys in the living room that I was nagging him to clean up.  We heard Angie's van pull into the driveway and he started picking the toys up faster than ever. 

All of a sudden, he made that all too familar noise and fell to the ground.  This seizure was probably the most violent one I could remember up until that time.  It was long, noisy, lots of shaking, and just about unbearable to watch. 

My heart was crushed because I knew this meant we would have to increase his meds and start the 'no seizure clock' all over again.

Over the course of the next few days we noticed that Ben would start to have a seizure and then stop.  I couldn't explain it except to say that he would make the noise, his body would shake for a minute, and then he would be fine.  I couldn't understand what this was.  We talked with Dr. Perry and he advised that we come in for another short EEG to see if we could pick up any of the movements we were describing.

The EEG results came back abnormal.  They showed generalized seizures - meaning they happen all over the brain.  Even though we didn't see any outward signs of these 'small' seizures during that short EEG they were picked up and evidenced then.

At the follow up appointment, Dr. Perry casually mentioned that he could have something called Myoclonic Astatic Epilepsy of Doose.  I asked him if he could write that down for me.  He said the only thing that wasn't really fitting for a definite diagnosis was the fact that these other types of seizures usually appear within days or weeks - not years - from the initial seizure.

We left for a visit to see my family in the Northeast and tried not to worry.  While there, the seizures only continued.  He had numerous drops and myoclonic seizures.  We continued to increase the new drug - Zonegran to no avail. 

One day, while visiting he had a grand mal seizure in the park.  This was the first time we had a seizure in public.  It was frightening for all of the cousins to see him like that, for strangers to stare with concern, and for us to not know what to do to help him.

After we returned home, the seizures continued to increase in frequency, duration, and severity.  Leeon and I both had to return to school as teachers and we were very concerned about our little man. 

You can read more about our visits to the Epilepsy Monitory Unit, the medications we've tried, and what's working for us on the other pages.

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