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.