November is National Epilepsy Awareness Month. With that in mind, here is a brief rundown of Reagan’s Epilepsy and Epilepsy in general.
It’s been a very, very long 2+ years working our way through Reagan’s Epilepsy. We still are dealing with a steady increase in seizure frequency, including nocturnal seizures. She’s currently on 3 anti-epileptic drugs (AEDs), and so far, it seems that none of them have put a dent in her seizure activity. We’re still fighting. We’re still testing, hoping to find that one thing that links it all together and gives us a way to stop her seizures.
One thing I know for sure from all of this is that I absolutely hate Epilepsy. It is so brutal.
I never really knew much about Epilepsy until we started down this path with Reagan. Before all of this, in my mind, Epilepsy was just tonic clonic (grand mal) seizures and was very rare, with maybe 1 out of 1,000+ people having it. It never dawned on me just how common it is, and how many different forms it can take.
When I was in Elementary School, I seem to remember that the ideal class size was 25 students per 1 teacher. With 1 out of every 26 people developing Epilepsy at some point in their lives, that means that someone in EVERY SINGLE ROOM had or will have Epilepsy.
I read earlier today that there are about 40 different types of seizures. I feel like I have become pretty well versed in Epilepsy, but I can only think of and name maybe 10 types. It is a such a beast, and so misunderstood.
75% of people with Epilepsy will never know what causes it. They are still discovering new causes of Epilepsy. Genetic mutations can cause Epilepsy. Deficiencies in glucose, mitochondrial disease, brain damage, and so many other known things can cause Epilepsy. Who knows what else is causing them in those other 75% of people.
There are so many treatment options out there, from multiple medications to changes in diet to brain surgery. But NONE of them are guaranteed. What works for one person can have an opposite effect on another person. There is no standard medication, procedure, or diet for all types of Epilepsy. Everyone and every type is completely different.
THERE IS NO CURE FOR EPILEPSY. Some people will be able to get it under control and manage it. Some will outgrow it. And some will live with it uncontrolled for their entire life.
Some Epilepsy is resistant to medication, known as Refractory Epilepsy. Doose Syndrome falls in this category. Reagan’s Epilepsy has so far been resistant to 4 AEDs. That’s not to say that there isn’t a medication out there that will work, or something else out there that will work, but it is to say that we might still have a long road ahead of us. We’re ready for it. We will keep pushing and keep fighting until we find what she needs.
Reagan being amazing after her sleep deprived EEG. She passed out before they even finished wrapping her head!
“Firefighters climb up ladders and use hoses and save people.” The cutest Firefighter ever!
Watching the three of you go thru this has been both amazing and heart wrenching!! I am so incredibly proud of the parents you guys are to Reagan. I see your struggle in your eyes and faces more often than I want too. In Reagan I only see joy, confidence, and humor and most of all LOVE. I see how much she is loved and how much she loves you! That’s a very lucky little girl- she feels loved and exudes love. She is an outstanding child in spite of epilepsy and because of you. Know that she is more blessed than most to have you as parents. No matters what comes she will always be among the most fortunate because of You and Blake!! Keep slaying this- You will never lose as long as you have each other!!
As I was reading this, I felt and thought everything that Lovie described. I am so proud of Reagan and the two of you. You are an amazing family and I am so impressed with your strength and determination – every day. J, you said it to me last week, it is your life. You’re facing it, doing it and not giving up.
Keep doing what you’re doing! Know that you have the love and support of a huge group of people. I am sending you all a heart!!!