Well, folks, its epilepsy awareness month so you know that means: you get to listen to me talk about epilepsy even more than I already do (is that possible?) AND our family is busy AF. In years past we have done a large fundraising campaign called #MyShotAtEpilepsy but I’m gonna be honest, this year we were tired and Adelaide has not been very stable… so we decided to be a part of at least one event a week because THAT would be less exhausting (sarcasm)… I digress.
Where was I? Oh yeah, epilepsy sucks. Monday we landed back in the emergency room as Adelaide was experiencing labored breathing and couldn’t keep her oxygen saturation in a safe range. She was super lethargic and becoming unresponsive - no bueno. By the time we got her into the PICU and they took a rectal temp we discovered she had a fever of 105.2. Thanks to her dysautonomia she was not displaying normal signs of a fever, in fact her limbs were cold to the touch. This high fever then brought on 90-minutes worth of seizures: not constant, but clusters, with a few minutes in between each. Once we got the fever under control, the seizures stopped, thank goodness. We’re still not quite sure what brought on the fever or breathing issues as all tests and scans came back negative but we think her meds might have been a factor. You read that right, her epilepsy meds, the same ones that are supposed to prevent seizures, possibly played a roll in a NINETY minute seizure.
I share this story because THIS is one of the reasons that this month is so important. We know so little about seizures and how to treat them that the meds available can cause more harm than the seizures themselves. You should see the warning labels on these drugs! They put anything you see on pharmaceutical TV commercials to shame and I’m administering three of these to my daughter daily (plus a slew of additional drugs to tackle other issues).
But won’t she grow out of it? Have you tried CBD oil? Unfortunately, not everyone’s child can fit into an installment of 60 minutes. While some people do grow out of their epilepsy and for others CBD is a miracle drug that is often not the case. Studies have shown that CBD or marijuana can often reduce the number of seizures someone may have but a reduction, while nice, is not good enough for me. If your child went from having 10 seizures a week to 5 would you settle for that? I didn’t think so. When understanding the complexities of epilepsy we have to think of it like cancer: there are many different causes and many different types. They can range in severity and some are more treatable than others. In fact the plural of the word, epilepsies, is probably more fitting that the singular, epilepsy.
I just reread what I wrote so far and I sound as if I’m ranting a bit and I blame that on the wine I’m drinking, hidden in a water bottle, while sitting in a hospital room staring at my daughter in a ladybug tutu on halloween. Epilepsy isn’t effing fair! Did you know that you can have a med that is working to control seizures and then the brain finds a work around it so that drug no longer works? Some brains just wants to seize that badly! 60% of people with epilepsy do not know why they have seizures. How in the world do you treat something when you don’t know why its happening? Which, I guess, explains why 30% of people with epilepsy have what is called intractable epilepsy, meaning that it is not controlled after trying multiple meds. Fun fact, Adelaide has tried so many drugs, and cocktails of those drugs, that every new med we try has a less than 2% chance of achieving seizure control. LESS THAN 2%.
This is why organizations like CURE are so important to our family. Another drug hitting the market is probably not going to help our little girl. But research studies that help doctors understand what is causing the seizures in the first place - now that could help. Research into new genetic causes of epilepsy - that could help. Research studying neuro sciency things that I cant event begin to understand - yeah that could help too. Sure, another med to try is great - but its not a cure. I want to know why this is happening to my baby and I want to know that another family down the road is not going to experience what we are.
So, it’s epilepsy awareness month and it is my mission to make the world as aware of epilepsy as it is of cancer. Because 1 in 26 people will be diagnosed with epilepsy in their lifetime. So maybe its not intimately effecting your life today, but that doesn’t mean it won’t tomorrow. We should all care because, trust me, you don’t want to be sitting across from a doctor who is telling you there is no cure and no defined treatment plan and you have less than a 2% chance of finding a med that will control the seizures. We need to care. The world needs to care. Please, please, please care.