Neuropsychology Evaluation

As another step towards surgery, Charles had to have a 6 hour neuropsychology evaluation with a pediatric psychologist at Children's Hospital.  Some of you may or may not know, Charles is VERY smart.  I put him in his "Genius" shirt just in case they didn't get that :-)  He was a trooper.  It was a long day for him, even had to have a lunch break in between.  We got his results back a couple weeks later in the mail and his IQ was near the top of the scale.  I always thought it was smart, but now I have proof.  Its amazing to his doctors that no matter what he's been through this past 6 years that he's still doing so well academically and that it hasn't affected his cognitive abilities. 

September EEG Repeated with SPECT, Plus "Code Blue" Night

Each test and step Charles takes is one step closer to finding out where EXACTLY the seizures are coming from in the brain.  So, we went back to the hospital for another 1-week EEG, but also added SPECT this time.  He did great.  I slept every night at the hospital.  One night, I woke out of the dead of sleep at 3am (which I never do) and sat up and immediately thought I needed to check on Charles.  I ran to his bed and he was barely conscious, I immediately hit the seizure button AND the nurse call button and they came in.  2 Nurses totally panicking, and one asked the other under her breath "should we call 'code blue'?" I said ?WHAT?! If you're thinking about, then DO IT!"  I texted my mom (she sleeps with her cell and Ken and I don't) to call Ken (and he was there within 13 minutes - it's a 20 minute drive).  About 30 doctors, nurses, specialists, etc were there within a minute, all working on him.  His nurse did chest compression as they couldn't get a strong pulse.  He was ultimately okay, but what a TERRIFYING experience.  They don't use heart/pulse/oxygen monitoring as a regular practice on the EMU floor (Epilepsy Monitoring Unit).  Everybody asked how did I know to get up, my response is "God woke me up".  That's all I can say to explain it. 

That night (actually morning now) after things settled down, an Epileptologists by the name of Dr. Pramote Laoprasert called me to explain that he reviewed his EEG from the night and that he was okay (obviously not super great though).  He had a grand maul while sleeping, which has not happened to our knowledge.  He had a thick Thai accent and I was probably impatient and unkind based on the horrible night we had just had, but it was also hard to understand him (since it was on the phone and lots of people around) and I was exhausted being up half the night.  That was our first introduction to Dr. Laoprasert, which would later become our "favorite doctor ever".

Charles got lots of fun gifts that week from friends, neighbors, family members, etc.  One of his favorites though has been a patchwork (I Spy) blanket that my best friend Annie West made him.  It's been a GREAT conversational piece whenever he has hospital visitors, staff, etc.  The Child Life ladies stopped by one day and helped him give his bear an IV....it was VERY entertaining.

Wedding Weekend - Charles is asked to be Uncle Phil's ring bearer...

Charles' Uncle Phil (Ken's brother) and his Fiance (now wife) Kim, asked Charles to be the ring bearer at their wedding!  This was very cool and Charles was SUPER excited!  But the night before the wedding, I found him a little teary eyed right before bed time.  I asked him what was wrong.  He said "what if I have a seizure when I'm walking down the isle".  I said "let's say a prayer that, that won't happen".  His faith is amazing to me! He felt better after that and went to sleep.  The next morning was the wedding.  He got through the wedding ceremony and walking down the isle with NO PROBLEM.  Then, 30 minutes into the reception, the seizures continued, but he got his reprieve long enough to fulfill his responsibility. 

This is quite often the sight of my boys after Charles has seizures. David holds his little brother while he's recovering. So sweet. Thanks mom (Dianne Greaves) for capturing this sweet pic.

July 2016 - Our First week long EEG

After meeting with the doctors over the past 9 months, they recommended we did a 1 week stay at Children's Hospital for a 5-day EEG to capture seizures to identify where they were coming from.  Charles was a trooper.  Unfortunately at one point, we went to look out the window (remember, he has a fear of heights) to see brother David looking for a Poke'mon Go spot.  And all of a sudden, he had a grand maul seizure.  I felt horrible, but the doctors had lowered his meds in order to induce seizures that week, so I guess we got some info we needed, but they are such awful seizures, they always make me super nervous.

He was sure happy when he was done and they washed his hair in preparation for going home.

Kindergarten and Swim Team/Summer 2016

I'm doing a little "catch up" but Kindergarten (2015 to 2016) went pretty well.  He was able to go to school almost every day.  He also swam on his neighborhood summer swim team and he did GREAT.  He won almost every race, a real natural.  He only had a couple of minor, minor seizures when in the pool (we watched him closely) and a few at the park when it was play time on Friday nights with his teammates.    We also had a trip to Vail for an annual work conference I go to (and bring the family)...on the drive up he got SUPER car sick so we had a detour to Vail Hospital (hence the 1 hospital pic) but looking back on it, I think it was some seizures in his belly, which has also happened since then.  We were in Vail during the GoPro events so that was a super fun weekend to be there.  Charles went to his first concert (didn't last long, as loud noise and crowds are a couple of his triggers).  He loved swimming at the hotel pool, eating ice cream, and trying out his slack line skills.  We also had a trip up the Gondola (for which he didn't look overboard, fear of heights also a trigger, and a big one).   Summer 2016 went pretty good, but when we started 1st grade and in school all day, it all went downhill for his seizures. 

Sunday Worst, Not Best

As we do every Sunday, we went to Church but during Sacrament Meeting, Charles' seizures were getting worse, so we went home early.  He must have had 50 seizures in 1 hour, poor baby.  So we left the other kids at Church with Grandma Dianne and Aunt Sheila and we took him to Children's Hospital in hopes maybe he could get an IV dose of anti-seizure meds.  It was the South Campus, but they couldn't help him.  So we made a follow up appointment for that week with his doctor, Dr. Miller who increased his meds again.  However, I want to point out, at that appointment, he noted the "pain" that Charles was having as not normal.  I thought it was odd, because Charles has ALWAYS had pain with his seizures and I assumed ALL kids (or at least most) experienced the same thing.  It would be months before I found out that was extremely rare.   And, no wonder he has such a high pain tolerance.   

Back with a Vengence - always December and January

Update - The first week of December (2014), when Ken was out of town, Charles had 2 seizures - one of them was while he was asleep - woke him up about midnight - so David saw it and took care of him until I heard him and ran in.  Luckily it happened to be a night I couldn't stop coughing (I had been sick the week before) so I wasn't asleep yet.  I think the weird/random coughing attack was a blessing so I could hear him.  He had another the next day and then things calmed down for a couple of weeks.  Then, when Tessi/Jordan/Quincy/Izach were visiting for Christmas, he had another on December 23...we were all in the family room watching a show, when Charles fell off the ottoman...first time he's fallen off something while having one since usually we have a little more notice that its coming.  Anyway, so that was the first time Izach and Tessi had been in town for a seizure.  So, we tried to have a calm Christmas.  Then, on January 29, 2015, life got a little rougher (4 days ago).  At 8:30am, Charles got his toe slammed in a bedroom door.  Sheila and I took him to the ER because it was obvious it needed some attention.  The Dr. numbed the toe with 2 painful shots - both of which Charles didn't even cry for - he was like a mini-superhero.  We spent the day at Grandma's house so Sheila and I could get a little work done while Charles re-couperated from toe ER visit.  A few hours later, he started having leg pains - like the "leg tremors" he's had over the years.)  By 4pm, he had 3 full blown (tonic-clonic) seizures (used to be called "Grand Maul).  Luckily, I finally got one on video (Thanks Sheila).  I have no idea of the pain from the toe put him in a tail spin into seizure land, but it sure seemed like that.  Anyway, we gave him clonazepam to stop the seizures.  He did okay for a couple of day, so we decided to go to Church.  I explained to his primary teacher that if he had any leg pains, to come get me...he did. At 11:30, he was in a lot of pain, by Noon, Grandma and Sheila were driving us to the hospital and Charles was screaming in pain.  I gave him 1 clonazepam (Sheila had one in her purse at Church - yay!)  The ER couldn't do anything for him and amazingly, he didn't have a seizure.  I guess he got the medicine just in time to stop it.  Then, we spent the afternoon watching the super bowl at home with friends and family.  Monday morning (today) he woke up with leg pains at 7:45 and had a seizure by 8am.  If he needs to use the bathroom before the seizure, he loses control of his bladder, so today and once last Thursday, he wet himself immediately after the seizure stops - when he has NO muscle control and is like a limp noodle from head to toe.  Poor kid! I just love this boy and SOOO sad for what an awful time he's having! I have a new appreciation for parents with special needs kids - I always thought he was special need in his own way, but this last 4 days has been x10.  I am hoping he gets through this in the next day or so and then magically has months of healthy living again.  I spoke with the neurologist and he said he still wouldn't put him on daily meds yet, since the rest of the year he usually does pretty well...but if this pattern continues, we might change our minds - I think he's had about 8-9 seizures in the last 2 months.  He's keeping track of them. What's interesting is that he now is very aware of when they are going to happen, asks for his medicine, requests holding my hand, keeps track of them and makes comments like "well at least the seizure stopped the leg pains"...he's so smart...he's decided he can't start school (kindergarten) in the fall...he wants to continue with "mommy school" - we'll see. :-) Thank you to everyone who has helped care for him this past couple of months - especially Sheila and Grandma!

Here is a picture of his toe and below is a video of his seizure...BEWARE, if you are sensitive, I wouldn't watch it, but if you want to know what his 45 second seizures are like in case you're ever taking care of him and need to know...click on the video (not sure it will work, but trying to upload it).