I realized while I was out for my walk this morning that I'd forgotten something really important that I wanted to share. Something very important.
Let me explain. But before I get into it, I think it's important for you to know I'm talking about epilepsy. What do you know about seizures? Seriously think about it. What does a seizure look like?
What do you know about seizures?
What does a seizure look like?
Now, where does your knowledge come from?
Now, where does your knowledge, of what a seizure looks like, come from? Think about it. TV? Personal experience? Is it something you picked up but can't remember where?
My knowledge base about seizures came from the medical minute commercials that used to air on tv, tv shows, and seeing a seizure live and in-person when a coworker collapsed at work and started to shake involuntarily. That collapse and involuntary tremble is probably what you thought about when you picture a seizure. But that is only one type of seizure. Some seizures are just as harmful but show few outward physical signs.
Now to my story than to some facts.
I don't know why, but I was obsessed with beating the curve when it came to potty training. Just a fast forward view, that didn't happen. But as first-time parents we all have our "thing" that we want to achieve or do better than anyone else. That ego rubs off real quick when you start to experience soul-sucking tired or when you have a second child and you realize your first child was awesome and easy and you were lucky with a side of skill.
I learned his poo face really quickly. When I saw the poo face, I'd verbalized what he was doing. I recognized it, which was step one to getting him to the toilet on time. Every blog I read said there was a change in expression when they peed. I looked and looked and looked and never saw it. Now I'm going to be blunt, 'cause you know I'm super wise now because I've had Two Kids (more ego with a dash of experience. PS, I' being serious and sarcastic at the same time). Looking back, I think the pee face is complete bullshit. Complete mom fantasy, and the most dangerous kind for our day and age, the mommy blogger "I need content so I'm going to make this up and wow the shit out of other moms". But I could be wrong. Every child is different and some babies may have obvious tells. Mine didn't.
So back to the story. At 4 months Marcus had great head control. We sat him in a high chair at the table, rolled a bunch of receiving blankets around him so he couldn't flop over and we filled his tray with toys. It was amazing!! I go to enjoy a meal while it was still hot and without a breastfeeding baby on my lap! This was a game-changer.
Then something happened that I will never forget.
He paused in play and looked off into space. At the time, I was convinced I’d just seen his pee face. He stared off long enough for a pee. Nothing seemed wrong or bad about the moment. I'd finally seen the pee face.
Now, in retrospect, I’m full of mom guilt. Because now I know I’d just witnessed a seizure.
I didn’t know about absence seizures then, or that anything was wrong. You’ll learn more about absence seizures below. Marcus would pause for short periods of time, then he’d always go back to what he was doing. There didn’t seem to be anything negative. Nothing triggered my mom instinct. I was looking for a pee face and I found one. If I hadn’t been looking for a pee face and found one, my explanation for his pauses, then I might have questioned the pause and brought it up to his doctor. Or I might have thought nothing of it because there was nothing amiss.
At the time, I was so happy. I knew the pee face and I knew the poo face, step one to early potty training complete! I noticed these pauses daily, and every time the diaper was wet (I'm convinced boys pee more than girls). It wasn’t until he was 2 and we started potty training that I realized something was wrong. Yup, already 2, not ahead of the curve for many reasons that will clutter this paragraph. We were in the living room, he was diaperless and he paused, and I lunged at him expecting a pee. But he didn’t pee. That was alarm bell number 1. That wasn’t his pee face, then what was going on? My mom instinct picked up and was on high alert, and my memory went back to the high chair. Shit, I’d gotten it wrong. Something else was going on. But what? was it bad? Lots was going on in the background of my mind, I could feel it calculating and pulling from memory and knowledge, but nothing was yet coming to mind.
I felt really guilty about this, but now I realize I did the best with what I knew then. I still feel bad for the time lost in helping him, but I don’t feel crushing regret and guilt. Mom guilt is an awful feeling. I adapted my train of thought, I educated myself and I charged at our medical system like a bull when I was armed with the right information and the confidence that I was right. And I didn't back down, not even when the doctor didn’t listen to me. I persisted even when we had a positive EEG that confirmed seizer activity on the right side of his brain, and his Doctor said seizures were normal because he had autism. His Doctor wasn’t concerned because he was developing and progressing. I didn’t accept that. I pushed for a neurologist. It took time. Nothing happens overnight in our medical system. And I’m so happy I did.
The neurologist was not of the same mind as the doctor. That’s when I realized his doctor had a bias. A Bias that could have harmed my son in the long run. You’ll read more about the danger of a medical bias below. The Neurologist said that 'a seizure, no matter how big or small, causes neurons to misfire in the brain and that could cause damage.' I was so happy I pushed to get a referral. And now, my son just turned 6 and has been medicated since November (it took me over 2 years of fighting) he’s been on medication and we’ve seen a tremendous positive difference in his day to day life. I wish we’d gotten results faster, it might have been better for him in the long run. But I used a huge amount of focus and energy and I made this happen. I have nothing to feel guilty about.
What are Absence Seizures
absence seizures, which affect about two of every 1,000 people, used to be referred to as ''petit mal'' seizures. These seizures are caused by abnormal and intense electrical activity in the brain. Normally, the brain's nerve cells (neurons) communicate with one another by firing tiny electric signals. But with a seizure, these signals become abnormal.
What does an absence seizure look like?
Typically, this type of seizure lasts between 10 and 30 seconds. The person, most often a child abruptly stops whatever he's doing (talking, walking, playing) and appears to "stare into space." Absence seizures rarely cause a true convulsion in which the person falls down or collapses.
Despite briefly losing consciousness, the person usually recovers fully with no lingering confusion or other ill effects. These "spells" may occur infrequently or several times per hour.
Here’s where the problem is if you’re a parent with a child who has these symptoms.
Because the vast majority of children outgrow absence seizure, some medical professionals consider this form of seizure in children to be common and because there is a chance they can outgrow them, they don’t see it as a concern.
BUT and it’s a HUGE BUT
About a quarter of children who have absence seizures will develop another type of generalized seizure called tonic-clonic seizures (formerly called ''grand mal'' seizures).
In children, absence seizures may interfere with learning and are often misinterpreted as daydreaming or inattention. So they don’t get diagnosed early enough.
So how do you know if your child is the child who will outgrow the absence seizures or if you child is in the 25% of children who will develop grand mal seizures?
YOU NEED TO SEE A NEUROLOGIST! YOU NEED TESTING. YOU NEED A MEDICAL SYSTEM THAT WILL ACT QUICKLY AND TAKE YOU SERIOUSLY. This is not a "well, let's wait it out and see what happens" kind of situation. We're talking about brain damage and developmental delays. These are a huge deal. They will affect your child's quality of life and impact your stress levels in the home. Trust me I've been there. It's a heavy load to carry around with you.
Can you tell I'm still heated and passionate about this?
Want to learn more?
Reliable References about Absence Seizures
PS Potty training beating the curve
He showed no signs of being ready. I kept sitting him on the potty at 6 months with mixed success. He was breastfeeding 4-5 times a day with feeds lasting 1-2.5 hours. He liked to use me as a soother. My daughter was born when he was 22 months old, and we had read enough about potty training regression that we didn’t want to risk it before she came. And we were on a journey medically with him that involved a lot of driving to Ottawa. We had the potty in the van, but we were tired as parents at this point and our marriage was not the same. All normal responses to stress, all will unwrap itself as the month progresses.