Day 20- Hodge Podge

What a day this has been.  I woke up this morning with nothing on my schedule but a hair appointment at 10 o’clock this morning but it ended up being cray-cray!  How does this happen?

As I sat with my hair full of foils, my 12 y.o. daughter Danielle, calls to tell me she can’t breathe and needs her inhaler and then my mum calls to tell me she’s being taken to the hospital- but I didn’t know any of this until later because I didn’t hear my phone ringing while I was under the dryer.  Of course as soon as I found out I attempted to call them both but both let me go to VM.  I panic when my 12 y.o. has issues because she is epileptic and I’m always fearful she will have a seizure. She has only had two (11 months apart) and is currently 14 months seizure free.  I know in my gut that she has outgrown the nightmare but it’s so hard at times to trust my instincts.  If you have ever witnessed your child turning blue and foaming from the mouth, you’d understand how powerful the sense of helplessness is- it stays with you forever.    Anyway, my husband called me shorty after to tell me he was on his way to the school with an inhaler, not to worry-  I was worried and I continued to worry until I heard from Danielle.   As my husband and I spoke we came to the conclusion that Danielle probably wasn’t having an asthma attack but rather a bout of anxiety over a regional band audition.   This morning Danielle told me that her audition was tomorrow night at 7, turned out she was wrong.  Her nerves had a grip around her throat and she was freaking out.  When she finally text me back she said she was fine and didn’t need her inhaler which made me feel a crap-ton better.

My mum- she’s fine too but I didn’t know that until after my hair was done and I walked into the ER.  There she sat, fine as frog hair with her cousin.  I didn’t stay long because there was no reason. My mum was fine and seemingly in decent hands- what was I going to do except worry about all the germs that were clinging to the inside of my nose and reeking havoc on my immune system??  No thanks.  After a quick hug and a bath in Purell I was off to grab lunch; two donuts & coffee from Dunkin.  MMMmmm….Once home I caught up on the laundry and homework. Same ole shit as every other day.  I really don’t mind though, I like being a housewife.  I wouldn’t trade my housewife life for the single life ever.  It’s what I was built to do.

Tonight at dinner I was taken aback a little.  We went to City Barbeque and a guy I know who worked there, his photo was in a frame on a shelf.  I walked over expecting to see him being recognized for outstanding customer service but instead he was being remembered a year after his passing.   Wow.  I feel like we just saw him – he was just smiling and talking about his kids, how happy he was managing City.  He went out of his way to serve us and to make sure we were happy and would return.  I didn’t know Geoff well, but what I did know of him, he was a good guy. He was my age- 40.  Sad. Very sad.     When I got to the window to order I asked what had happened to him- she ‘thinks’ it was a car wreck.  I’ll have to Google that after this post. I don’t know why, but I feel the need to know what happened to him.

Anyway, so Danielle is off to her audition with the other kids from the state and I am off to my workshop to begin stripping paint from an old chair of mine.

. Danielle

GOOGLE RESULTS::** At 1:16 p.m. Monday, officers responded to an injury accident on Boone Avenue in which a vehicle driven by Geoff Thomas of 140 Alabama St. reportedly pulled in front of another vehicle, driven by Chelsea Jacobson of Paris. Thomas was unable to speak to officers at the scene and was transported to the University of Kentucky Medical Center with unspecified injuries. Jacobson told officers she was southbound when Thomas pulled in front of her.**

Day 9 – 14 months

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?”
The hell? 
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!!!

image

image

-Willow

Epilepsy Sucks!!!

image

My daughter is a healthy 12 year old, but being diagnosed with epilepsy has created a crap-ton of anxiety for her and the rest of us.
December 24, 2012 I got a phone call at 2 a.m. telling me that Danielle was having a seizure. She had stayed the night with a family friend after a busy evening at her great-great grandmother’s for an early Christmas.

A what???!!! Danielle doesn’t have seizures!!!  Fear dressed me.  Before I knew it I was at the friends house and Danielle was being wheeled out by an EMT on a gurney.   She reaches for me. My heart was instantly broken for her.
Inside the ambulance I was asked question upon question while Danielle struggled to come-to.  She was out of it.  Confused and crying.  It’s awful to see your child like that knowing there’s nothing you can do about it.  I myself had only seen one seizure in my life but it wasn’t my child.  This fear was something new, unknown, unwanted.
Once in the Children’s hospital ER, Danielle was “awake” and talking.  What a relief that was.   I cannot tell you how many people came in asking the same questions, “Is she sick?” “Does she have any diseases that you know of?” “Are there drugs/alcohol in the house?”  No. No. No. NO!!  Stop asking questions over over and over.. it’s 3am,  adrenaline has exhausted me and everyone and their momma has asked us the same damn questions over and over.   I was beyond irritated.   Here’s a tip… take a note and pass it on and stop harassing nervous parents!
The last straw for me was when I was asked to leave my child’s room so the social worker could ask some questions.  Ok. No problem.
As I stood outside the woman sitting with my child was asking her if someone sexually abused her. What the ..?? Are you serious right now?
You’re just gonna ask my kid this without telling me what you’re going to talk to her about?   My sweet girl just had a tonic-clonic grandmal seizure and you want to know if someone sexually abused her??? Danielle was horrified. Danielle is half Japanese and the Japanese half of her is very modest. She was beyond embarrassed.
She had just come to herself after suffering something she did not understand and now you’re asking her things like that?  Flipping retarded is what that is.

After a day or so she went home without a single answer as to why.  The doctor was horrible. Besides his bedside manner being ass, he spoke shit english.. and thats putting it mildly. On a good day I would be irritated with him.  What made it worse was that without a single reason he gave Danielle pills with the side effect of a flesh eating rash that can kill her.  IS HE OUTTA HIS DAMN MIND????  smh.

Once home I made a call to a surgeon friend of mine who made a call to a neurologist friend of his and within a couple of weeks we drove an hour north to Children’s Cincinnati.   Danielle was taken off of the meds, because it was stupid to put her on them in the first place. The new, wonder German doctor explained to us in perfect english, that this single, unexpected seizure, however scary, was a “freeby.” All people are allowed a single seizure in their lifetime without having anything wrong.  Sometimes it’s hormonal, sometimes it’s due to sleep deprivation, and other times .. well.. you just short circuit.
With that we go home to wait.  You see, if you can get to one year without another seizure, you’re pretty much scott-free.   We followed all the new rules: no climbing trees, no swimming alone, no being left alone, no taking a bath without the door open,  no staying up late and a 30 min break without electronics before bed; reading.  This is to transition the brain from stimulating lights to a calm state.  All was working like like a charm until 11 months later; after waking Danielle from falling asleep on the sofa while watching, “The Polar Express,” seizure #2 took place.

As I said, I woke Danielle up to go upstairs to brush her teeth.  I hear her older stepsister crabbing at her. I go up to see what was going on and I’m told that Danielle was throwing things and falling down. Shit. “Don’t panick.  You’re an ex-firefighter. You’ve got this.” That’s what I told myself. It worked.

Danielle came to the bathroom door. I asked her if she was OK and she said she was.. at the same time her arms jerked away from her sides. I asked again if she was sure she was OK and again she said she was then she fell face first into a basket of shoes.  She immediately popped right back up and was crying that she hurt her belly, at the same time I was rushing toward her.  It all happened so fast. I gripped her tightly and began to walk her downstairs. I asked my husband to call 911 and grab the emergency meds that stop seizures.  Danielle’s little legs gave out on her a few times before we made it downstairs.  I had her lie on the floor and told her I thought she was getting ready to have another seizure.  She cried and said, “I don’t want to have another seizure..” and with that she went into another full tonic-clonic.
I wasn’t there to witness the first one. I didn’t see her body stiff and arched back. I didn’t see her eyes rolled up or the foam coming from her blue lips.  I didn’t hear the gasps for air.
All I could do was watch.  I leaned down to her and stroked her hair while telling her it was ok, mommy is here although I’m sure she couldn’t hear me.  I remember praying aloud, “Oh God, I can’t do this again… Please help me.”

You never really pay attention to just how long a minute is until you watch your child turn blue.   How was I suppose to wait 5 minutes before administration of emergency meds?? I got to three. I couldn’t wait any longer.
As the ambulance arrived, Danielle had stopped seizing but she still lie motionless and out of it.    In the ambulance a too big of a catheter was placed in Danielle’s tiny vein.  A glucose check was performed and the medic was shocked to see a sugar level of 23. He instantly blamed the seizure on low blood sugar and hit Danielle up with a tube of dextrose.  None of that made any sense. The kids had just eaten cupcakes and hot cocoa before she fell asleep.. If anything else her blood sugar should have been too high.
Danielle was admitted to Children’s Lexington .. again.  A battery of test were performed .. again, and again, no one has a clue.  The fMRI and a 48 hour video EEG showed nothing, Danielle was diagnosed with epilepsy anyway and put on Keppra twice twice a day.  I guess two unprovoked seizures earn you a title like that.

It has been almost 8 months since her last seizure but the anxiety is still off the hook high for all of us.  Danielle doesn’t make a fuss, she wears her title proudly.  She doesn’t even tell me when she’s nervous.. I have to guess. It’s that prideful, modest, Japanese blood pulsing through her veins I guess . Hahaha. Recently we purchased a $700 seizure monitor for her bed and Danielle has begun counseling.  Both have been good for her, still, everytime her muscles are fatigued or twitch due to falling asleep..panick sets in.
Poor kid.
Just this past week I had to pick her up at 1130pm from a friends house because she was nervous.  She was so tried from being out in the pool and sun all day, yet she couldn’t fall asleep. She knows that sleep deprivation could cause a seizure.  When she got close to sleep, her body would jerk and she’d panick.
I feel horrible for her.

We do all that we can to deal with this demon on our backs. Most days we beat him, occasionally he wins.
What can we do but keep on keeping on?

Thank you for stopping by.