epilepsy

August 25th started out like any other Sunday.
Jack and Charlie were the first ones awake and they both sleepily went to the kitchen and poured themselves a bowl of cereal. They sat down, blessed their food, and started eating. Jack asked Charlie a question and after not getting a response for a second or two, he looked over at his brother. Charlie's head was tilted back and his eyes were rolling back in his head and then he fell to the side off his chair, slamming down on the floor. Jack screamed "DAD! MOM! CHARLIE! CHARLIE!"

Charlie was having a seizure.

seeing your child convulsing and contorting their body like that was one of those moments that ages a parent.
and a sibling.

the ambulance came, but by that time the seizure was over. it lasted about 30-60 seconds. he was so sleepy. because I had some meetings at church and because the paramedics said he was fine, Chris took Charlie to the ER with Jack and Ellie to support him on the drive there.
they did a CT scan and other tests and everything came back normal.

the next morning he was able to stay home from school after being checked out by our pediatrician. we even made a stop at Bob Evans for pancakes, Char's favorite.

we hoped that it was one of those fluke things. 

a one time thing.

kids at church and friends from school were very sweet. in fact, several of Ellie's good friends sent gifts and cards home for Charlie when they heard.

then Wednesday morning, after I woke Ellie and Charlie up to get ready for school, I went into my room to read my scriptures. before I sat down I heard Ellie's scream. 

He was having another seizure.

then another the next Monday. 

poor kid. 

they wipe him out for a couple hours.

after multiple tests, an EEG, an MRI and blood work, they thought that he just had epilepsy. no real reason causing it. just epilepsy. we discovered that he was not only having the grand Tonic-Clonic seizures, but also less noticeable Absence seizures several times a week. these staring seizures always scare us because he does the same thing with them that he does at the beginning of a tonic-clonic seizure, looks up towards the ceiling with his eyes fluttering and his head starts to turn to the right. 

every one of his major seizures have been first thing in the morning. we have been so blessed that he has been at home for his seizures, with others near by to keep him safe. he's never hit his head or had any injuries. we are so thankful.

the older kids were quite scared in the beginning, but jack and Ellie both know what to do and have been able to help so much during the seizures. Owen has been harder to deal with. he was traumatized with the first 2 seizures. both took place at the table, so in his 4 year old mind, sitting at the table caused Charlie's seizures. whenever Charlie would sit down Owen would go into a hysterical panic. it took a couple months for him to be able to sit at the same table as Charlie without worrying, but he's doing fine now. in fact, he's usually the one that says "Charlie, don't look over there cause a light is flashing!"or some other warning that usually doesn't really matter, but to Owen its a way he can be helpful. they care so much about Charlie. when he has a seizure, they immediately cancel whatever plans they had and are willing to let us all just hang out and let Charlie sleep with mom or dad by his side.

his medication dosage was being increased every time he had a seizure (about every 3 weeks or so). every time they increased it, we noticed his personality slowly changing. this is a side affect of some seizure medications. he was beginning to be quite irritable and snap at everyone. he'd get very quiet and sad for no apparent reason. in fact, halloween he just didn't feel like dressing up or trick or treating. (we made him go along and he ended up having a great time). it just wasn't really Charlie.

after his latest seizure on Nov 23rd, his neurologist wanted him to have another EEG to see if things were the same. When they called to tell us that, we already happened to be at Nationwide Children's Hospital in downtown Columbus for an eye apt for Charlie. they said they wanted to do it that day, so we hung around downtown for a few hours. 

we had the EEG and they told us it'd be about a week before they'd let us know the results. so when the neurologist called me the next day, I knew it wasn't good news. she said that during the EEG it is clear that Charlie had 2-4 major absence seizures, which is way more frequent than we had thought. I knew he was having more and more, but I thought they were primarily taking place in the morning. but the EEG was from 2-3 pm. 

it was evident that between the increase in absence seizures, the continuation of the tonic-clonic seizures, and Charlie's mood swings that this medication wasn't working. so she instructed us to go get some blood work done because the new meds she wanted to start him on can affect a lot of things.

after discussing that she said "well, there is one other thing that I want to talk to you about...".

my heart sunk.

"I had several other neurologists check the results and we are all seeing large amounts of abnormal brain activity. There are a couple factors that may be causing this, but you should know this is a major sign of a learning disability."

no parent wants to hear those words.

this abnormal activity can be due to a couple other things besides a learning disability. 

one- the seizures themselves could be causing it, so if we get the medication right, then maybe it will go away.

two- the medication that he was on (Keppra) may have been causing it.

so here we are.

right now we are weening him off the Keppra while introducing the Depakote. We are waiting to hear back from the neuropsychological group to schedule an evaluation, which will most likely be in a couple months due to a full schedule in their unit. 

Chris and I have wondered for a little while if something was going on... more than just the seizures. Charlie just hasn't been the same. he has always learned things in a different way than our other kids, but the past couple months its just been different. I don't know how to explain it. but about a week and a half ago I prayed that if something wasn't quite right, that I would know how to talk to his doctors or who I should reach out to. Charlie has always had issues with textures or the way things feel. he can obsess over small things and have a hard time changing something up at the last minute. in my mind I had wondered if he may have some autistic tendencies. but he's always done well in school, very well in fact. he's always had friends and never struggled socially. but the past couple months, I feel like he has reverted to a 6 year old version of himself. at 6, that was normal. at almost 9, its not so normal. 

anyways, we are so thankful to have good doctors. we are so extremely grateful. we are also so thankful to have the teacher he has at school. Ms Dexter has only been teaching for 3 years and this is her first year at our school. when we told her about Charlie's epilepsy she let us know that she has had multiple students with epilepsy. I don't think its a coincidence that she came to our school and she is Charlie's teacher.

through this whole process, chris and I have been so aware of the Lord's hand in Charlie's life. He is caring for him and providing for him. we are so very thankful. 

we know that with time we will get everything figured out. we love Charlie and are so thankful he is part of who we are as a family.

through this whole experience Charlie hasn't once been afraid or worried about anything. he doesn't remember the seizures after they happen, so he seems quite blissfully oblivious to the whole situation. the only downside to everything has been the fact that while he is still actively having seizures he can't ride his bike or play on the playground equipment... that's such a bummer to a 3rd grader!