I haven’t posted in awhile because well, life.  Since today is Epilepsy Awareness Day, it seemed fitting, but to be quite honest every single day is Epilepsy Awareness Day in our house.  I am sure there are many people who see me posting these very personal parts of parenting a child with Epilepsy and think “wow, she’s sharing a lot” and I will be the first to tell you that prior to having a kid with multiple disabilities I thought the same of over-sharers.

Then boom, your child has a seizure and you feel alone in this space that you never imagined you would be in.  I turned to so many special needs groups to find answers and I did, but it wasn’t until I shared our story did I not feel alone.  I have “met” wonderful people through Facebook and Instagram who are in this same Epilepsy Parent club as me, the club none of us wanted to be in but yet here we are.  I also found from sharing our story that I could help other parents whose child just had their first seizure and are going through those same emotions of fear, worry, anger and loneliness.  I no longer feel alone, my Epilepsy Parent club has grown, though every part of me wishes it hadn’t.  I don’t want you in this club, I don’t want you to know what this is like, I don’t want this for your child.  But I can promise you this, should you find yourself where I was six years ago, call me, text me, message me, you won’t be alone.

For more information on Epilepsy:

https://www.epilepsy.com/learn/about-epilepsy-basics

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This picture popped up on my Facebook page from a year ago.  The caption read “Favorite spot with my favorite human. Lots of doctors and specialist appointments recently, celebrating moving in the right direction.” This was before Reagan started a medication that we would quickly learn had side effects that included slower processing speed, extreme fatigue and a constant state of being in a fog.  Yet, I didn’t know that on the day this picture was taken and on that day I was hopeful.

Hopeful that we had found the medication that was going to give Reagan both seizure control and the freedom to be a kid.  Though this medication did give her some seizure control, it did not give her any freedom, that was taken from her.  You see this medication caused such extreme fatigue, she would fall asleep for hours after taking her morning dose, causing her to miss school and events.  With some tweaking of the dose, the fatigue faded, and again we were hopeful. Then we started to see the other side effects, the mental fog and lose of knowledge that once was. My little girl would be standing right in front of me, but it was almost as if she was hiding in plain sight.

These periods of extreme fatigue and mental fog have come and gone and come back again over the past year. This medication has been a blessing and curse, a blessing that Reagan has had seizure control and curse because it took her with it.  Thus, it’s time to start a new treatment plan and with this one I am hopeful. Hopeful for seizure control and hopeful that my little girl comes out of hiding.

Articles are circulating about how people are using the Ketogenic diet to lose weight and in-turn finding mental clarity, which equates to sudden know-it-all status.

Here’s the thing, the Ketogenic diet wasn’t developed for you or me or even to lose weight.  It was in-fact developed in the 1920’s to treat Epilepsy and control seizures by switching the body’s primary source of metabolism to a fat-based energy source as opposed to glucose.

I’m pretty fired up by all these articles and celebrities/people in general thinking they found the magic pill in the Ketogenic diet.  Why, you ask? Because within months Reagan will begin the Ketogenic diet.

No, I cannot start this at home, she will be hospitalized for 5 days, this is a medical treatment.  No, I cannot decide what and how much she eats, a dietitian will give us the guidelines. And, yes it will be similar to the Ketogenic diet all over the news, but I can tell you this, it’s also very different.  Reagan will need to change her medications from liquid to pill form, yes the liquid counts as carbohydrates.  Reagan will need to change her personal hygiene products, yes they too contain carbohydrates.  Reagan will need to eat on schedule so her blood sugars don’t drop and her glucose levels will need to monitored daily.

Reagan is seven, this diet is extreme for a child her age.  Especially for  a child who embraces food, eating out, cooking and baking the way she does.  Reagan is doing everything she can to understand what this diet entails, asking questions and making mental notes of the changes ahead of her.

Maybe Keto is your magic pill, I certainly hope it is ours too, especially since this is what this diet was intended for.

This picture was taken at roughly the 75th appointment we went to in 2018.  Yes, you read that correctly 75 appointments for one person and to be honest that number should have been higher but illness, vacations and sometimes a cancellation because a kid just needs to be a kid.

Parents of neuro-typical kids are probably reading this and wondering how is this even possible, while parents of medically complex kids are nodding their heads and going to check calendars to count the number of appointments they took their child to.

These appointments entail all the standards: the pediatrician, the dentist, the eye doctor,  and the ENT but then there is the Neurologist, the Orthopedic doctor, the physical therapist, the occupational therapist, the hippo-therapy lessons, the blood draws, the anesthesia evaluations and quite possibly one or two I forgot.  It does not include the surgery that came as a result of many of those appointments.

Yes, this picture was taken at roughly the 75th appointment in 2018, and yes at this appointment we were told there would be four other appointments…big ones.  Yes, there is a smiling kid and a Dad who spent several hours of his birthday talking about his daughters medical history.  What you don’t see is a Mom who though she is drained from the driving, the appointment scheduling, the medical jargon and the after visit summaries is beyond grateful to have a team of people who have cared for and supported her child.

I do not live with Epilepsy, but I live with Epilepsy.  I do not take the medications, but I call them in to the pharmacy, I administer them three times a day and I track the awful side effects. I do not experience the brain fog, the loss of cognition, the slow processing speed and the difficulty to keep up with peers, but I see it, every single day. I do not have seizures, but I do feel them deep down in every ounce of my body.  I am not sleeping for hours on end after a seizure, but I am exhausted to my core. I do not live with Epilepsy, but I live with Epilepsy.

I am a parent to child with lives with this awful neurological disorder. I am a parent who is angry, sad and frustrated and knows that my child and every person living with Epilepsy deserves a cure. I am not living with Epilepsy, I live with Epilepsy.

I have started and stopped this blog countless times.  I have turned to it to write about good days, bad days and the support of family and friends.  I have turned to it to get all the emotions out.  This week I broke down, like full on needed to be in bed crying all day, broke down. Epilepsy is hard.  It’s hard on the person living with it, it’s hard on the caregivers, it’s just down right freaking hard.  There aren’t many answers and often times it’s a guessing game.  Hardest of all, there is no cure.  Sit back and imagine if your child was diagnosed with an incurable neurological disorder. Here’s the thing you wouldn’t just sit back, you would fight.  You would fight for answers, you would fight for a cure.

So today,  I want to let you in on my fight and in on the world of Epilepsy.  Why today?  Because today, I finally had the guts to hit publish.

I have followed many Special Needs blogs over the years and their stories have helped me to know that I am not alone on this journey.  Thousands of other families are going through similar but different struggles on a daily basis.  If anything I hope this helps another family know they too are not alone.  The struggle is real and the weight and worry we wear (as parents) is heavy, but our kids are the greatest blessings, blanketed in strength, resilience and grace.