Saturday, March 6, 2010
The Seizure Saga Continues.....
Darnit! I had decided that Nicky's Grand Mal seizure last June, was a one time event, brought on by his pneumonia and I let it go. But I was WRONG! Nicky had another full blown episode last week.
When I knew he was okay, I cried. I cried like I have not cried in a long time. It was the grief that keeps on giving cry. The cry of disappontment that screams out "What's next? Please Stop! Enough Already". When I finished crying, I had let go of the pain and disappointment and made room for acceptance. From there I knew;
The good news: this time I knew what was happening to him and it was really helpful to know that he wasn’t dying.
The bad news: he had another seizure, which means we have to add seizures to our life, officially. Never thought I would be grateful that Nicky has been diagnosed with an abnormal” EEG or long for the days of absent seizures. But I do.
The Ugly: As if the ASD bucket was not enough. We now have two separate buckets, two separate spheres of care: the Autism Bucket, and our new Siezure Disorder bucket. Two totally different buckets to live with and to manage. Two totally different life long challengers for a really terrific little man.
The Reality: We have handled everything else and we will handle this.
A little history: When Nicholas was 4 his developmental pediatrician noticed that he would freeze for a few seconds with a totally blank stare. She said she believed that Nicky was experiencing “absent seizures” and recommended that we get a 24 hour EEG which would gather more details than the 2hour we had already done.
We did the EEG, it was determined that he had abnormal activity. This EEG showed the the abnormal activity was happening at the same time, Nicky typically woke up at night. It was helpful to know that his sleep challenges were related to his abnormal activity.
He began taking a low dose of valporic acid/depakene to keep things under control, as it is not a given that an abnormal EEG will result in break through seizures. We all hoped that it would not go any further for Nicky, but it did. I wish we didn’t have this to contend with, but we do and that said I’m glad we have been treating it for years, because lord know’s where Nicky might have been if his abnormal activity had gone undetected.
A thought, if your kiddo is having sleep problems it might be worth it to get a 24hr EEG. If all is well...fantastic, if there is an issue better to know now.