Today marks 14 months that my daughter has been seizure free. This is a big deal as every month that she doesn’t have a seizure brings us closer to the 2 year mark. Once Danielle gets to the 2 year mark, she can go off of her anti-seizure medication. (If she wants to)
On Christmas Eve 2012 I got a call at 2:30 am that my 10 year old fell out of bed and had a seizure. Wth?
There’s nothing like being awakened from a dead sleep and hearing something like that. Adrenaline flooded my body as I got dressed and flew out the door. My husband drove as I sat impatiently, praying to God that Danielle was ok.
When I got to her friends house she was already on a gurney being wheeled to the ambulance. She was crying and confused but she knew who I was. Once inside the ambulance the medic asked a bunch of questions ..like, “Has she had seizures before?” She hadn’t. She has been perfectly healthy. Good kid with straight A’s and no mental issues.
Danielle was confused and crying for most of the ride to the children’s hospital in the next town over. No way in hell was I letting them take her to the bugtussle hospital in our rinky-dink town.
By the time we reached Children’s, Danielle had come to herself and was asking why was she in an ambulance and whatnot. (Later she explained it felt like a dream) Inside the ER the same questions were being asked by everyone and their momma. I was getting irritated with all of the repeating of myself. I’m was like, “Dayum, isn’t that shit already in the notes?”
I understood having to repeat to certain people but not to every freaking person that wore scrubs and entered the room. Who wants to deal with all that crap when their kid was just foaming out the mouth and turning blue? The last straw was when child protective services asked me and my husband to leave the room so they could talk to my 10 year old alone. Heartbroken and beyond disgusted I left knowing the questions they would ask her. They wanted to know if she had done drugs and/or if she had been sexually, physically, or mentally abused. Although it was a routine procedure, I wanted to donkey kick that CPS lady in the trachea. I felt as though I was being accused of a crime when I know I’ve never even spanked my child once nor had I ever taken any kind of drug around her. I have a weird phobia of drugs due to an overdose that my own mother had when I was a child. There’s no way I’d ever hurt my child or any child for that matter. And oh my god I felt bad for Danielle. This kid was sheltered from racy tv, racy music, bad language and anything else that might strip her of her innocence too soon. She was my baby, the youngest of three and my last. I just wanted her to be a little girl for as long as she could and now some bitch from CPS was asking questions like, “Has anyone ever touched you between the legs?”
I kept thinking, “She had a seizure you cow, how about running a flipping CT SCAN on her brain?”
About 4 hours later Danielle was admitted into Children’s. Later Christmas morning she had several tests done, all of which came back normal. I wasn’t ok with this answer. Normal people don’t have seizures out of the blue like that. The doctor didn’t speak English well and he had the bedside manner of a stick. I kept trying to ask questions and understand the reasons why Danielle had a full-on grand mal seizure but he made me feel like I was an idiot and like I was bothering him. Dr. Stick wanted to put Danielle on a medication with a side effect of a flesh eating rash.. um no… why would I want my kid on that when you just said she was perfectly normal???? Oh and the best thing ever, Danielle’s follow-up appointment was set for months away because Dr. Stick was busy. Um. No. No. No!!
Once home I was a nervous wreck. I had spent way too much time on Google reading up on grand mal seizures and SUDEP. I was scared to death that Danielle would seize again and stop breathing that I couldn’t sleep. Every two hours my husband or I would go upstairs to check on her and every little sound I heard inbetween, I flew like Superman up to her. Fear consumed every atom of my being.
A friend of mine is a surgeon up in Cincinnati and lucky for me, he had a friend who’s a pediatric neurologist at Children’s Cinci. Guess who got an email address and an appointment that same week? That’s right, momma don’t play when it comes to her babies. 🙄
Dr. Wesslekamper was (is) amazing. He took time and explained that sometimes shit just happens – no reason required. He said that many things can cause a single seizure; stress, hormones, sleep deprivation, illness or disease. Since Danielle had perfect test results we would go with sleep deprivation due to the craziness of winter break and the excitement of Christmas. No medications were needed just follow a few rules and see what happens.
Rule 1: Get good rest.
Rule 2: no electronics 30 mins before bed.
Rule 3: read a book before bed to transition the brain from stimulating lights to sleep mode
Rule 4: don’t be alone while walking home or swimming
Rule 5: no locked doors
Rule 6: no baths unless the door is cracked open
Rule 7: no climbing trees
See you in 6 months, oh and by the way, a single seizure doesn’t make anyone epileptic. He said if we get to 1 year without another seizure we were almost guaranteed never to deal with another one.
Fast forward 11 months later.
I wake Danielle up from falling asleep on the sofa while watching, “Polar Express.” Danielle is sent upstairs with her sisters to brush their teeth and get ready for bed. A few minutes later I hear some ruckus going on upstairs and I head up assuming I was going to settle a fight between the girls.
Joy tells me that Danielle fell, got up and then threw her toothbrush. Danielle said she didn’t and that she was just tired and she was fine. Danielle comes out of the bathroom and her arms fly away from her body and she falls face first into a basket of shoes. She immediately pops up and cries that she hurt her belly. I knew what was happening and I knew I needed to get her downstairs.
Danielle went limp on me a few more times before reached the carpet downstairs. I had her lie down and I told her that I thought she was going to have another seizure. She cried out, “I don’t want to have another seizure!” Following her last word, out she went.
Those were the longest 3 or 4 minutes of my life. My husband called 911 while I talked to as her body contorted and stiffened. When she turned blue and foamed from the mouth I cried out to God, “Please God, I can’t do this again…” I administered the emergency meds and finally she stopped seizing.
Another trip to children’s, more normal test, and another trip to Cinci after.
Two unprovoked grand mal seizure gave my “perfectly normal” child a new title; Epileptic. With the title came her Keppra and with all this came a crap-ton of anxiety. The initial goal of reaching 1 year seizure free was extended to 2. Shit.
We have done everything we can do to ease mine and Danielle’s anxiety starting with the purchase of a $700 bed monitor. Danielle freaks out when her body jerks as she falls asleep. That’s because her second seizure started like that. She said she was fine when I asked because she felt like she was just tired. She thought the seizure jerks were sleepy jerks. 😥
The bed monitor has been a blessing but it sucks real bad when the cat gets in the bed and starts kneading the blankets. Hahaha. The monitor thinks Danielle is seizing, goes off and I fly! That kind of adrenaline will NOT allow me to go back to sleep.
Danielle was recently put on a small dose of Lexapro once a day for her anxiety and panic attacks. It’s been three months and she’s doing great!
The only issue we have now is keppra-brain. Hahaha Her anti-seizure medication causes her to forget things and sometimes it gets frustrating to have to keep reminding her to do something..like fold her clothes or take her meds. (We bought a pill box for that)
So yeah, 14 months seizure free today. It’s a big deal. Only 304 days to go!!!