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.

I wish Tiernan would stop finding new shoes to drop

I guess it is finally time to update this blog.  A few things have happened in the last 6 weeks so I should probably record them here. 
Back around the second week of October, shortly after Tiernan went to bed, he returned to my room complaining of a stomach ache.  He climbed into bed next to me and then said his heart was also beating REALLY fast. I could feel his heart pounding without even touching him and when I did try to get an accurate HR count, I kept losing count because it was going so damn fast.  I had to start over 3 times before I was able to keep count for a full minute.  By that time it was a little slower but it was still clipping along at 148 beats per minute...at rest!  I immediately sent a text to one of our favorite nurses, Jodi, and kept checking every few minutes for about 15 minutes.  Tiernan fell asleep next to me and his HR made it down to around 100, which is still too high for a sleeping kiddo.  We got him back to his bed and the next morning it was normalized, but I put a call in to cardio.  Jodi let me know that SVTs (supraventricular tachycardia) is when the heart rate is up in the 160s at rest.  I'm not certain, but I would not be at all surprised if it was when it was too fast for me to keep up.  We (cardio and I) agreed to do a 30 day heart rate monitor since this was definitely out of the ordinary for Tiernan.  Thankfully it was not the sort that has to be worn 24/7 because those are rough.  This one is used only if he is symptomatic.  He learned how to hold it to his heart and record if he feels symptoms and also how to send the recording over a phone line to be analyzed.  Of course, one of the main rules of monitors like this is that once you start it, you can pretty much guarantee nothing will happen during those 30 days, because, obviously.  And, true to form, 30 days passed with no heart rate events to speak of. 

However, on Halloween Tiernan found another way to keep things exciting.  After his best Trick or Treating experience of his life, he was off to sleep around 9PM.  Perhaps 20 minutes later, Jason and I heard him making some really strange noises.  I have later realized part of the reason the noise was so upsetting to me was that it was reminiscent of the awful high pitched noises he made at 9 days old when he nearly died at home from undiagnosed congestive heart failure.  (Hello PTSD.) At any rate, when we went in, we found him unable to respond to us, drooling and pretty much immobile. Jason called 911 and the police officer was here within minutes.  During this time, as Tiernan started to come around, he was still not able to tell me his name, his age and anything he was saying was garbled and slurred.  He couldn't follow basic directions to lift his arm (he would lift his leg and say he didn't understand). I fully believed he was having a stroke.  The paramedics arrived within about 5 minutes of the call and by this point he was beginning to speak more clearly and answer questions correctly.  He still couldn't remember much of what was going on, although he did say he remembered having a nightmare that we were out trick or treating and he lost me.  The paramedics did a 12 lead EKG which came out perfectly abnormal (Tiernan's EKGs are always abnormal which reflect his abnormal heart.)  By about 10, Tiernan and I were on our way to Mary Bridge Emergency to have him checked further. 

The good news was that he was behaving completely normally and had a great attitude about everything.  He sang his songs all the way to hospital (about a 40 minute drive that time of night) and said how grateful he was to the paramedics and police officer for being there for him.  By the time the ER doc checked him out, he confirmed that it was definitely NOT a stroke, thanks goodness!  So we were left with two options:
Parasomnic event: Night terrors with sleep paralysis
Seizure of some sort.
Tiernan has a history of what we always thought were night terrors and sleep walking, so that seemed like a reasonable diagnosis.  However, this was significantly different from those other events.  It didn't look like any seizure I'd seen, but I also know that seizures can take many different forms.  So we were sent home with a referral to a neurologist for the first time since he was 4 months old.  Jason stayed home with him the next day and he seemed basically unscathed. 
Neurology appointment happened on November 9th and he saw Dr. Korol, the very same neurologist from 9 years ago.  She suspects he had a Benign Rolandic Seizure.  These are developmental seizures that happen during sleep.  Typical onset is around 7 or 8 years of age and kids generally outgrow them sometime in their teens.  Obviously, if he is having seizures, this diagnosis is best case scenario.  To hopefully confirm, he is scheduled for an EEG tomorrow morning.  They need him to be sleep deprived though, so he and I get to/have to stay up until midnight tonight (he is excited because he gets to stay up later than Tristan.) and then I have to wake him up by 5am and drive to Mary Bridge, hoping he doesn't fall asleep on the drive there.   We are dreading the process of the EEG but are hopeful it will reveal some clear answers.  If it does not, then Dr. Korol recommends we have an MRI done to see what might be happening. 

We won't have our follow-up appointment until December 12th. 

I guess while we are waiting, we will just have to keep our eye out for more shoes dropping.