This is a pretty exciting month for our family! Our middle guy is seizure-free, and is finally coming off of his seizure medication!
We’ve had quite a ride with Aiden, and today I wanted to share a little about his journey through epilepsy. I’ve talked with a couple of moms recently who are going through the early stages of testing and worrying about their own kids, and I thought I’d share a few things I wish I’d known about absence seizures when we were starting down this road…
Aiden, did you hear me?
Trying to get my five-year-old’s attention was like trying to talk to a guy who is watching football – no response whatsoever. His golden eyes would turn to blank stares that would last between 10 and 30 seconds, which actually seemed longer when we were practicing his reading or when he would stand still, as we would cross a busy parking lot.
Sometimes Aiden would rub his nose or make a little chewing/swallowing motion with his mouth, so I figured for a while that he was just off in La-La-Land during these little phases.The more often he zoned out, the more frustrated I became.
I feel awful telling you that I would get angry with my little guy – for what I thought was blatant disobedience or disrespectfully ignoring me. I read parenting books and disciplined him while I tried to figure out what I was doing wrong as a mom.
It was when I noticed that they were happening more and more often that something clicked, and my “Mommy Intuition” began to awaken inside me. I read up on these periods of zoning out, and realized that he might be having petit mal seizures. I made an appointment with our family doctor, and we were referred to a pediatric neurologist.
Before our first appointment with the neurologist, we were given our instructions for the sleep-deprived EEG he needed to diagnose/rule out seizures. Our little guy was so excited for the first test when he was allowed to stay up until midnight.
We have watched Spongebob, played games, and eaten snacks (without sugar or caffeine) to keep ourselves awake until midnight. Then it was time for a quick rest before I had to get him up at 4AM – and keep him up until his EEG appointment later in the day. Waking him up, and keeping the poor guy awake was always the hard part! Out came Ninja Turtle cartoons and games of Battleship and Connect 4 – Anything to keep our eyelids propped open until we saw the doctor!
When you and your little one arrive at the office sleep-deprived, they will start measuring and marking spots on his head where the electrodes need to be placed. It’s a scary to see your little one hooked up to so many wires, but help really is on the way.
That’s when the technician will hand your kiddo a pinwheel and instruct them to blow continually on it for 3-5 minutes. Your little one will be loopy from being tired, and then they will hyperventilate while blowing the pinwheel – and it can bring on more absence seizures. It’s stressful to watch your child, knowing that there’s nothing that you can do for them while they are experiencing this test. Please know that your little one couldn’t be in a safer place right then, having their episode monitored and results read by a neurologist. Just hang in there!
After the hyperventilating part of the test is over, our office shut off the overhead lights and told Aiden that he could finally close his eyes. He was asleep almost instantly. The technicians tell the parents to avert their eyes for the next few minutes as a strobe light flashes over your child while they sleep. This is another way they try to stimulate seizure activity.
After a few minutes of rock concert lighting in the small room, the flashing stops and the test is over! It’s time to wake up your snoozing little one and wait until your visit with the doctor. Ours have usually been later that same day, so we could leave to get lunch or browse in a bookstore until it was time to go back, but I’ve heard that other parents have had to wait a few days to get their results back from a specialist.
The most common medication given for absence seizures is HORRID in the liquid and pill form. Aiden used to complain that the liquid dose tasted spicy. It wasn’t until a drop landed on my finger once and I licked it without thinking that I realized just how disgusting it was. Poor guy! We found that letting him chase it with juice made the experience not quite so awful.
When he wanted to switch to pill form, we took the neurologist’s advice and let him practice swallowing Tic Tacs. Even the pills smelled bad, so he sometimes swallowed his pill in a spoonful of applesauce or yogurt. Pretty soon he was a pro and could get it down with plain ol’ water, but he was glad for the creative ways we tried to get around such an unpleasant chore!
I started watching him like a hawk. He wasn’t allowed to ride his bike in the street, but he could all he wanted on the driveway or sidewalk. I watched closely and stayed about an arms-length away when he was learning how to swim. I wanted him to have my arm to hold onto if he needed support during a seizure.
I still let him climb trees, skateboard, jump on trampolines, and do pretty much whatever BOY thing he wanted to, but I always kept a close eye on him. The thing that was the most difficult for him was that he couldn’t play video games for the couple of years after his diagnosis because of the flashing lights they produce – positively devastating to this boy. He was a happy guy when he was later granted permission by his doctor for up to 30 minutes of video games each day!
As we worked with the doctor to adjust his medication level, we saw that his episodes were happening less and less – and I was able to relax even more when he had his first seizure-free EEG. I’ve still watched him closely to make sure he wasn’t outgrowing his medication dosage, but all has been well! His last day on medication is later this month, and our whole family will be celebrating with him!
He put in the hard work – avoided caffeine, stayed away from video games, went to bed early regularly, endured blood work, put up with EEGs, and tried to have a good attitude through the whole mess. We are so very proud of our little guy, and we know you’ll be proud of yours as well!
I asked Aiden what he wanted to tell you about having absence seizures, and he gave me his list…
Do you have any other advice for families going through absence seizures? I’d love for you to share in the comments below!
Do you know a family that is dealing with absence seizures right now? Would you please do me a favor and forward them this post? Aiden and I would love nothing more than to pass on what we have learned to them!
Just remember that whatever storm or journey you are going through right now, you are not alone. I promise.
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