What I’ve learned having a kid diagnosed with Epilepsy

They say one in twenty six people will be diagnosed with epilepsy each year. Even with a family history, and a child with a previous nasty head injury, we still were not prepared to be one of the twenty six.

My seventeen year old had her first seizure just over six months ago, just one day after getting her drivers license. Was it the stress of her first time driving that finally put her over the threshold? We will never know. We do know that we have now had over fifty seizures to date, our highest month bringing in one third of those alone. There is honestly more I’ve learned in the last six months than I can share in one blog…or even book. But there are so many things I’ve learned, that I wish I could have found on a blog or website somewhere when we were just starting out. So if you have a child who recently began having seizures, or know someone who does, I hope the information below can hep you.

These are just the facts that make our case unique, there are a million stories out there, but I had a lot of trouble finding one like ours, so here it is.

1. We were diagnosed with Epilepsy and put on seizure meds after the first seizure, but neither Keppra or Lacosomide worked.

2. After a 5 day EEG that produced no seizures, a PEDIATRICIAN came in and asked my daughter if she was stressed (two months of seizures and tons of missed school her Junior year, ya think?). Hormonal teenager, she was of course in tears…so, he diagnosed her with Non Epileptic Psychosis Seizures. Aka, anxiety induced convulsions.

3. Another neurologist read her chart and saw her seizure on video and placed her on anxiety meds, which did nothing but give her crazy dreams. In fact, after that pediatrician, two other neurologists swore that these simply were NOT epileptic seizures, and anti convulsants would never help.

4. My daughters seizures don’t look like anything I’ve been able to find video’s of online. Nothing prepares you for seeing one. My husband called me and said “It was just so violent, you didn’t tell me how violent it was” over and over again after he saw his first one. But for the purpose of this blog and education, I will describe her seizures as best I can. Her legs seem to kick or pedal. Her eyes stay opened -fixed, like they are watching you. Her arms jerk and flop. Her pelvic thrusts. Her mouth moves like she is gagging. They look exactly the same weather she is awake or asleep. And ours most often come in clusters, several back to back. Generally late at night and early mornings are worst.

5. She does have an aura, though it took us a while to figure it out because she never remembers her seizures or the time leading up to it. She has about a 30 second warning before a seizure where her toes and fingers tingle, she gets dizzy, and she get’s a stabbing sensation in the back of her head that we now know are referred to as ice pick headaches. Apparently they are as lovely as they sound. It took me asking a lot of questions every time I noticed her acting weird to put these things together. Now she knows when she has these symptoms, “I must be about to have a seizure, mom says this is how it feels”…but she never actually remembers the feeling herself.

6. Fun fact, did you know that nocturnal seizures are not common in Non Epileptics? Nor are opened eyes, or auras? Nope, those are stereotypical of Epileptic Seizures.

7. However, it turns out ALL of her symptoms are very common of Generalized Partial Complex Medial Frontal Lobe Seizures…which are more rare than your typical tonic-clonic (grand-mal) seizure, but not AT ALL uncommon…

8. Did you know that Epilepsy used to be treated through Electromagnetic brain stimulation? It’s really hard to catch a seizure on EEG.

9. Where we finally got logical help, answers, and medication – an Epileptologist! Don’t wait. Your family neurologist is not the same.

12. Our doctor told us to imagine the worst hangover you’ve ever had in your life; the nausea, the brain fog, the exhaustion, the soreness, throbbing head, everything. That’s how you feel after a seizure for hours, or even days when you’ve had multiple. We call it zombie mode.

11. Seizures kill brain cells and open you up to all kinds of fears like suffocation, car accidents, and drowning (huge risks to the epileptic), not to mention things you never even knew existed like SUDEP – Sudden Unexplained Death in Epilepsy. While that last one is rare, it’s all super scary and completely overwhelming.

12. Say goodbye to sleep and hello to jumping every time you hear a sound or your kid calls your name. Hello to sleeping a lot of nights with your child (yup, even at 17), and lots of days at work together.

13. It is a slow process. Way slower than we hoped, way slower than I was prepared for. But, seizure disorders have a high success rate of medical treatment. And yes, medications are scary and come with a slue of risks. Not the least of which is birth defects. She’ll likely come off of all meds when she get’s pregnant one day, and go on bedrest. Not to mention that she can never swim alone or bathe alone ever again. God bless the man who marries her, because she’s gonna be a real handful. But…

14. There seems to be hope in sight. We’ve only had 2 breakthrough seizures the last two months since starting a new med. We aren’t to the full dose yet, but there finally seems to be light and life at the end of the tunnel.

15. And praise God that I can trust that He is in control, because I so clearly am not.

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