Welcome to the seizure club

So Tiernan definitely has been having seizures.  

Dr. Korol is not surprised by this.  

She did say that the EEG looked mostly just like she expected....

...but a little bit not.  

That is the Tiernan way.  

There's most, there's some and then there's Tiernan.  

He is writing his own version of everything in this world.

He never follows the rules.

So Dr. Korol wants him to have that MRI to get some more clarity on what is happening.  

She is mostly convinced these are still the Benign Rolandic Seizures, but the EEG was just different enough that they could be Full Body Seizures.  

Either way she is not eager to prescribe medication unless they start happening during the daytime.  

A seizure in and of itself is not the dangerous part.  If they only happen during sleep, there isn't really much of a risk, aside from falling out of bed.  Daytime seizures are scary because there is always the risk of injury due to falling.  So for now we will lower his bed (we have it on "stilts" so his lego table could fit underneath) and be on the lookout for signs of more seizures.  

HOW TO SPOT A SEIZURE:

If his pillow is wet in the morning that is a pretty good sign of seizures.

Put some sort of monitor in his room so we hear/see what is happening.

If, during the day, he zones out, we should pinch him.  If he responds, it's not a seizure.  If he does not react, it is an Absence Seizure.

OTHER TIDBITS OF INFO

"He CAN NOT be sleep deprived.  That is absolutely a trigger for seizures."

Therefore, Doctor's Orders state his bedtime must be no later than 7:30 on weeknights. 

He accepted that news better than I expected. 

MRI is yet to be scheduled. The team wants him admitted and have sedation with his cardiac anesthesiologist rather than just the quick sedation. (This is not a surprise to me, and I tried to tell the scheduler he needed that, but oh well. So the difference is he will have to spend the entire day there instead of the 2 hour special under IV sedation. 

In the meantime, Dr. Korol said call if we think he has had any seizures, but otherwise, given a clear MRI, we would check back in 6 months.  

Something tells me we will be seeing her much sooner than that.

This kid takes it all in stride. Just another thing. No big.

Abby something....

I’ve always said Tiernan has a heart worthy of the Frankenstein monster, but now we can add the brain to the party. 

This afternoon I got a call from the neuro nurse to say that his EEG came back “abnormal” and that they were moving our follow up appointment from December 11th to November 27th. 

There is nothing else to report except that when Jason originally met with Dr. Korol, she said that her Hope was that the EEG would be abnormal because that would corroborate her suspicion of the Benign Rolandic Seizures. His symptoms don’t really match any other seizure disorder apparently so we should be happy (?) with this I guess? If the scan had been clear, she would have been worried about more serious problems. 

I’m grappling with this idea that the abnormal result is a positive outcome.

I’m also struggling with the idea that my poor boy has yet another health condition to add to his list. It just feels unfair. 

That said, I know it could be worse and I’m trying not to let my own brain get too carried away. 

Hence the jokes. 

As always, if I don’t laugh, I cry. 

Or yell swear words. 

Or both. 

So...jokes. 

EEG Day

Tiernan and I stuck it out and stayed up until midnight (no easy feat for this mama) and I was awake by 4:30 and Tiernan was up by 5.  He was surprisingly easy to wake up, unlike most days.  There was one point during the ride to the clinic where I thought he might fall asleep, but he powered through (with the help of some games on my phone) and was ready to go.  

After all our years going to Mary Bridge Clinic, this was an area of the building we had not ever experienced.  He enjoyed the waiting room couch.  :)

He had a wonderful EEG tech named Karen who prepped him well for what was to come.  His main complaint was how hard she had to press to mark his head for all the electrodes.  Apparently, his top three worst procedures of his life are as follows:

1. Endoscopy (scope through the nose to check on his vocal cords post bivent)

2. EEG prep ("She was DIGGING into my head with a CRAYON to mark it!")

3. Blood draws

Open Heart Surgeries and chest tube removals really aren't that bad, you know.  

During the test, he had to follow directions to open and close his eyes and answer basic questions.  Then she did a test with a strobe light and also one where he had to blow a pinwheel for a minute. (Apparently both, strobe lights and nearly hyperventilating can induce seizure activity).Finally she had him lie on his side and got to sleep.  It took him about 15 minutes of the 20 minute sleep test to actually fall asleep.  She was surprised how long it took given he was sleep deprived.  I was not at all surprised.  Famously, he fights sleep just a little bit.  

In the end, he did prevail, and she was able to record some sleep data.  

He was rocking some pretty great post EEG hair and took it all in stride.  (Karen did comment on how chill he was about the whole thing.)

We won't know the results until his follow up appointment on December 11th but every time I describe what happened that night I can't help but feel they will say it was a seizure.  Obviously, whatever happens, we just roll with the punches because that's really all you can do.