Faced with the Unknown

My three-year-old has idiopathic epilepsy. 

idiopathic = the cause is unknown 

I heard from Jude's neurologist today. He does NOT have the rare, but treatable form of epilepsy known as ESES. 

Tape and a stocking cap hold the electrodes in place.

This is what the back of the EEG
head wrap looks like.

ESES - Electrical status epilepticus in sleep

Basically, a child (like Jude) is monitored overnight in the hospital using an EEG test. In layman's terms, doctors and nurses use a sticky paste to connect tiny wires and electrodes (suction sensor looking things) to different parts of the patient's scalp and forehead. The electrodes measure brain waves and activity as the patient sleeps.

Jude has done this twice. This 'go-around' went better than the first, but it's still not fun. This time, the neurologist just wanted to make sure he didn't have ESES. Even though my gut told me he didn't, I believe in letting doctors do their God-given abilities to help find answers. 

Jude has a severe language impairment. I've known it for a while, and as time goes on, it's becoming more and more frustrating on everyone's parts. Jacob is frustrated because he can't understand his brother's "jargon" when they play together. My husband and I are frustrated because more often than not, we're not sure how to meet Jude's needs when he's trying to communicate and we spend the next 20 minutes playing guessing games, which leads to over-stimulation and inconsolable meltdowns.  

Could you imagine what it must be like for Jude? He tries his darndest to express himself when he's hurt, sick, or wanting to share something about his day. But, no matter how hard he tries, no one can understand most of the things he communicates.

So today, when I started sharing his test results, people have started asking me how I feel about them. Well, it's hard to say because there isn't a right answer. 

I mean, I guess on one hand, I should be thankful he doesn't have ESES. But on the other hand, it means that he's still a medical mystery. 

Doctors don't know where 10-15 minute seizures have come from. They don't know why he doesn't sleep well. They don't know why he cannot communicate as properly as he should for a child who has had 82 sessions of speech therapies from professionals, all by the age of 3 years, 12 days old. Doctors don’t know if Jude’s behavioral challenges stem from medicine side-effects, his communication disorder, or both.

There are no answers. 

None. Nada. Zip. Zero. Zilch. The Big Goose Egg.

I just wanted answers. 

I hate the unknown. When you must make tough decisions that affect a tiny little human's life and health, the unknown sucks. 

So, I guess that is how I’m feeling about the results of the ESES test...

Coming up this month, we move on to testing for sleep disorders to see whether it’s the epilepsy or something else playing a part as to why Jude rarely sleeps more than 5 hours at a time. Prayers, as always, are appreciated. And in the meantime, if you see me in person, a simple hug or smile is the perfect antidote to my weary heart.