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).