My older son was diagnosed with seizure disorder when he was four years old.
When he was first diagnosed, the pediatric neurologist immediately put him on a drug to control the seizures, which is called Depokote, and is known to cause liver problems. Possibly. So we had to have him go to our local doctor's office, get his blood drawn every three months to monitor not only the level of medication in his blood, but to make sure his liver was functioning properly. Then our doc's office would fax the lab results to the pediatric neurologist, and I'd pick up a hard copy, just in case, and because I'm that mom, before we'd go to the children's hospital in Tacoma for the appointment with the pediatric neurologist. I'm thankful our family physician supported us doing this, because nobody's got time to drive 2-1/2 hours in one direction for a simple blood draw.
We had to medicate our son twice each day. So, we mixed that shit up in ice cream.
Because, what 4-year-old is going to say no to ice cream twice a day?
When he was six, our son was diagnosed with autism spectrum disorder. Yes, he's vaccinated. No, his vaccines didn't cause his autism. And if you're going to argue, then please stop reading right now. And fuck off. Because that's not the point of this post.
Also, all that shit was proven to be falsified.
Anyway, the point is: medication.
Over the past six-and-a-half years, my husband and I have become quite skilled at breaking pills, crushing pills, mixing meds, tracking side effects of the now seven different pharmaceuticals, along with various combinations of pills, which is known as a cocktail.
Most of the medications we've tried to keep our son's seizures to a minimum have come in the forms of pills, capsules, or liquids. One medication we tried came in either a liquid or a gel cap. Based upon the fact that our son couldn't swallow pills, we chose the liquid, since, at the time, our child wasn't really old enough to understand. And, going with our new pediatric neurologist's advice, who said it is really difficult to get the gel outta the gel cap.... Yup. We chose liquid.
Which was brilliant until our son decided to not drink it.
So I called Seattle Children's Neuro...and we got the gel caps. And lemme just say, it really is a fuckin' mess to get gel out of a gel cap.
Even if you use a really really really sharp quilting needle.
On the upside, we switched meds, since we never were able to effectively use that medication because we couldn't get it in him.
No, I don't remember the name of the medication. Sorry. Yes, it's in the attic somewhere in a box with all the other medical records. We've tried so many different meds to control seizures...and really...when your child's pediatric neurologist, who you know cares about your child and your family says, "Well...your son didn't really read the book on how to most effectively have epilepsy" and "he has a rare form of epilepsy called Lennox-Gastaut Syndrome" and "he's not likely to out grow his seizures"...no matter who you are, and how optimistic you are, you start to wonder if he'll ever be able to do certain things...like drive...or take a shower alone...or swallow the pills his brain depends on...so that his brain stays on and he doesn't loose consciousness for 2, or 3, or even 4 or 5 seconds...10 or 20 or 50 times each day.
He's had more than 50 seizures a day. When he was little, and before we knew what we were dealing with...he'd have hundreds of 1-3 second mini seizures. Hundreds. Where his eyes would flit back and forth. He'd sway, like a tree in the wind. But I didn't know. I didn't know he was seizing..... But that's his epilepsy.
An EEG confirmed it when he was only four.
But now he's 10-1/2.
And can swallow pills.
His dad and I are beyond excited! And we are incredibly thankful to his Special Education teacher for teaching him. She's quite aware of the fact that my son takes meds, and what they are for.
He is currently on three different medications: two are for seizure control, and he takes each of those twice a day. One is for sleep, because he literally cannot stop his brain from thinking and talking and doing. And, when you are a person living with epilepsy, regular sleep is vital because if he doesn't sleep, he seizes more, and that's typical in people who have seizures. If he gets adequate sleep, like 11 hours a night, then he seizes less. He requires that much sleep because he seizes. It's a total chicken-or-egg situation.
And he's tired a lot because his brain works harder than mine to get through the day.
But he's swallowing pills!
No more mixing them in apple sauce. Or pudding. Or ice cream.
I mean, what 10-1/2 year old wants to eat medicine flavored anything?
And so I have a little hope.
Because his pediatric neurologist, who really does know his shit, said that most kids don't swallow pills till middle school, because they see other kids doing it and they feel a little peer pressure.
So, tomorrow, I'm calling Seattle and letting them know. And asking for a new 'script for gel caps.