Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Monday, May 4, 2015

Return of the Beast

OK so remember back in January?

When we were fighting the beast?


In case you are a new reader....

In addition to being diagnosed with Prader Willi Syndrome, Nicholas has also been diagnosed with a very rare form of epilepsy called ESES or Electrical Status Epilepticus of Sleep. In plain English, this means that when he sleeps, there is some electrical discharges that occurs in his brain. When this happens it interrupts his sleep and can at its worst, cause significant regression. Individuals diagnosed with this condition can experience a loss of speech, balance, physical ability, cognition and behavior.

The tough part about this illness is that there is no outward sign of a seizure, it can only be detected by the use of an EEG.

Once a year we head into Boston to perform an overnight sleep study.


In January, Nick and I spent the night in Boston. And although it was a trying time for both of us, we were thrilled to learn that there was no seizure activity.....his EEG was clear.

or so we thought.

Today, we followed up with Dr Takeoka, Nick's Neurologist.

After careful review of Nick's EEG, he discovered it was not clear as the hospital staff originally suggested. He noted  3 or 4 spikes (or discharges) at the rate of one every hour or so. These were noted in the frontal lobe of the brain, the area related to attention and speech.

It appears that Nick's beast is a formidable foe after all.

He has formulated a new tactic, re-emerging from his hiding in the far recesses of Nick's brain.

He is a clever demon, transforming himself into a slow steady rhythm of discharge, rearing his ugly head and refusing to retreat.

But fear not dear readers.

We are a special needs family.

We are no strangers to battle.

or cunning, relentless beasts.

We do not know the meaning of the word surrender.

We will continue to fight.

Tamisen the Paladin SirTiefling.deviantart.com