Tuesday, June 29, 2010

I'm not even sure what to call this

On Sunday night, Will had a difficult time going to sleep. He cried for a while. Nate went in to lay with him and calm him down. Will really seemed to relax, and soon there was no more crying. We went about our evening washing dishes, taking Otis for a walk, putting away laundry, updating the blog...

After the crying had been done for about 45 minutes, I decided to test my luck and put away Luke and Will's clothes in their room. I tip-toed in and started hanging things up. I looked at Will and noticed that he was breathing rapidly. I took a closer look. His head was sort of over the top of his pillow, so I adjusted him. He was wide awake.

He started to move his tongue rhythmically across the roof of his mouth and teeth. He was unresponsive to my voice. And after about 30 seconds, he vomited. I took him to the bathroom where he got sick again. When he was done, he gave us a huge grin. With the right side of his face. The left side of his face remained emotionless.

It now appears as though Will had a seizure on Sunday night, though no one can tell us for sure right now. Nate took Will to the ER immediately. His facial paralysis went away after a couple of hours. X-rays of his shunt and a head CT revealed nothing wrong with his shunt. They came home very late with an appointment to see a neurologist today.

Will has been absolutely fine since Sunday. We watched him like a hawk last night, but there was no repeat of the event. He went to the neurologist today, who said that with a basic evaluation and description of what had happened, Will either had a seizure or a stroke-like event. We had been hoping that Will's symptoms would reveal that he had Bell's palsy, a temporary facial paralysis which can be brought on by something as mild the common cold. However his facial paralysis would have lasted for weeks or months if it was Bell's... it wouldn't have gone away in hours.

We have an EEG scheduled for mid-July to take a look at the electrical activity in Will's brain. If Will had a seizure, then his EEG will reveal distinctive patterns that will alert the neurologist to the type of seizure that he had. We also have an MRI scheduled for the same time, in the case that the EEG reveals no seizure activity and Will had some other type of brain event.

It is quite common for children with cerebral palsy to have a seizure disorder or epilepsy - around 40%. Of children with cerebral palsy and seizure activity, those with quadriplegic spastic cerebral palsy like Will make up the largest percentage. This correlation is due to the extent of brain damage seen in children with quadriplegic CP. Thankfully if is the type of epilepsy typically seen with children with quadriplegic spastic CP, ensuing seizures do not cause further brain damage.

So now we wait. And we try not to wonder too much... however I think that is going to be impossible. Too many maybes and possibilities. It is possible that this event was Will's first seizure. It is possible that Will has had these types of seizures before and because they typically happen nocturnally, we never knew. It is possible this wasn't a seizure. It is possible that this type of event will never happen again. It is possible that this type of thing will now happen regularly. It is possible that this event and diagnosis don't mean too much, don't change too much. But for now, it's just too soon to know.


Christie said...

Sending hugs and support your way. We'll wait and pray...hate that you have to wait until mid-July. You know where I am if you need a break and a shoulder to lean/vent/cry on.

Kelly said...

Hi guys...I hope Will is okay!! If you need any moral support at all, this is what I do for a living, so feel free to ask any questions for which you might want a non-jargon response. My work is in tandem with the Pediatric Neurology Department at Boston Medical Center. If I can be of any help at all, please let me know

Jackie B said...

Our thoughts & prayers are with Will and your family. Hoping for the best.

Jackie B said...
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