Institute of Medicine Report Highlight: By the Numbers

65 million…

Individuals in the world have epilepsy

33 million…

The population of Canada.

54 million…

The population of France.

150,000…

New cases of epilepsy in the United States every year.

1 in 10,000…

Newly diagnosed epilepsy patients that will die from sudden unexpected death in epilepsy (SUDEP).

38…

Drugs that are available for epilepsy use world-wide.

7th…

The rank that epilepsy merits on the global burden of mental health, neurological and substance use disorders worldwide after Alzheimer’s, schizophrenia, and depression and alcohol use; but ahead of migraine, panic disorder, insomnia, post-traumatic stress, Parkinson’s disease, and multiple sclerosis.

2…

Number of antiepileptic drugs that needs to be tried and failed in order to be considered drug resistant to epilepsy.

1…

is the number of daytime seizures needed to trigger driving restrictions in every state in the U.S.

32…

days is the average waiting time for a new patient to see an epilepsy specialist.

25…

days waiting time on average for an inpatient evaluation to an epilepsy monitoring unit in the US.

166…

Number of epilepsy centers in the United States.

1 in every 26

Americans will develop epilepsy over the course of their lifetime.

by Joseph I. Sirven, MD
Editor-in-Chief, epilepsy.com
Last Reviewed: 6/20/2012

Link: Click Here

Can You Level Up While Bleeding?

It seems like a comet's revolution since my Humanling had her last seizure.  In our house the revolution time frame is tweaked just a tad.  But if she goes to this Saturday without a seizure, it will be three weeks I believe.  That's a long stretch for us.  With school being out and she not having to feel the wrath of her dastardly Not Special at all Ed teacher, she can be more relaxed and who knows, maybe that lends a hand.  She also does not have to wake up quite as early.


I don't know if I've mentioned but Humanling showed me this thing on her head back in December.  She is the master of obtaining "things" on her skin or weird symptoms of some kind that lie across the border of 'iffy' for a doctor's attention. The kind where if you go to the doctor's office for it, you aren't rushing for an appointment for fear of looking like a hyper insurance spending dolt.  The kind of things where you coolly tell the receptionist, "Three months from now?  Yeeeeaaaahhhh.  That's just fine."  But this .... growth (ew...the word is even ominous) was on her scalp. And as the proud owner of a child with issues that affect the brain, I don't want anything except hair on her scalp.  I don't need extra riddles and puzzles going on up there. It was taunting her daily so that her little talons were tearing it up at night.  After she got a hold of it, it was an angry red and swollen mass, way overdressed for this party.


I think I recall her pediatrician saying it was eczema or something of that ilk and recommending I see a dermatologist.  Who recommended what he thought it probably was, but wanted us to try a steroid cream for about a month first.  I freaked over the S word but was bolted back down to the ground with doctor speak.  He mentioned the amount she was getting was so small (but it's near her brain!) and that it wasn't the home run hitting type.  Reluctantly I tried it and it didn't do anything except make Herman the Growth, less angry looking.


Ah, so we found out that Herman is actually from the Nevus Sebaceous species.  According to Wikipedia, it is a "congenital, hairless plaque that typically occurs on the face or scalp.  Likely it was there since birth.  But once those precious beings of ours hit puberty, Herman also hits puberty and grows larger.  


The downside to this visitor is that it can overstay its welcome and turn on its owner.  Nevus can Jekyll and Hyde right into sebaceous carcinoma. Or that icky C word, skin cancer.  Although I'm told it's a more benign type.  My mantra again....but it's near the brain!!!  No cancer thank you, will be ok at all, nevermind near her brain.  I'm not sure about other moms of Eppies but I am overprotective of her head.  A snowflake is lucky I don't shoot it for landing on her head.  


So today was our appointment with the plastic surgeon to have it removed.  She was a great sport and played her DSi throughout.  But don't let the photo fool you. The needle they used to anesthetize her head was shiver worthy.  She is usually the kid who will watch blood being drawn from her arm.  Today however, she was obviously in a lot of pain.  The removal part did not hurt, thankfully.  But her shirt was somewhat ruined by blood (although they tried all the laundry tricks immediately with peroxide).  The doctor laughed when I said to her, "Your hair is a beautiful shade of red now!"  It was all blood.  They cleaned her up as best as could be done and nine staples later, we were outta there!  


We very much could have had her knocked out.  But....I don't like the thought of putting that type of anesthesia in her body - she's just a bean pole.  And a bean pole with epilepsy.  So we went for a local.


There are risks with the local as well.... arrhythmia and seizures.  Seizures show up enough that I'm used to them.  I don't want to learn how to deal with arrhythmia in a child. I asked if this is the type of problem that shows up a lot or if it happened in the history of the procedure somewhere and they have to cover bases by telling me.  It turned out to be the latter.  


She's pretty sore and it looks really tender.  I'm left with the thought of wow, I saw a big hole in her head....should I have taken a picture?  There won't be another moment like that!  I have no idea how any doctor looks at that and has a normal life when he clocks out.


Moving over to the research side, I question many things to see if they have anything to do with epilepsy.  Typing in Nevus Sebaceous and Epilepsy to my buddy Google,  yields minimal but informative results.  DermNet NZ says "Neurological disorders are rare, but occasionally occur in children with very large sebaceous naevi. Epileptic seizures are the most common problem."  


Why did I have to Google that to find this out?  No doctor is telling me about it and I'll bet that I will be two for two when I inform her neurologist of this.  (The plastic surgeon did not seem to be aware of it).    My question is now of the chicken or egg variety....does this growth cause the epilepsy?  Is it a byproduct?  Will removing it better a cure?  That last sentence should have a few rainbows, unicorns and Channing Tatum scrubbing my dishes.  It's a little far fetched, I know.  But I do have to wonder.  


Say Goodnight, Herman.  Goodnight Herman.

Jack From State Farm...Coming to a Big Brother Clinic Near You

Next to me lies the sleeping body who's inhabitant is desperately hot from this summer heat. Blech.  We're only used to so many of these a year.  Taking it's cue from yesterday, it is over 95 degrees today.  I worry more about Miss Humanling in the heat because it seems that the heat can be a biotch with epilepsy. 


We've had a good week or two, which is always much appreciated (thank you God, Universe, Aliens, Starlight!)  That's not to say that she hasn't woken up vulnerable....I've just been able to kick her tiny butt into gear and get her on her feet before anything major happens.  Thankfully most of the time she listens.  (Did I really say that?)


She got her yearbook the other day and was showing me all the kids who were in this club or that club.  She is in none.  She doesn't seem to have the stamina to be in a club for too long but every year we do like Frosty the Snowman...."HAP-PY BIRTH-DAY!" and start all over again.  Sometimes I feel bad that I'm the closest buddy she seems to have.  Like we're going to be that old mother and daughter couple that walk down Main Street with bags or a cart.  Zombie expressions on our face and gibberish falling out of our mouths and staining our shirts.  Not even a good cruise can cure that.


I chose the most important time to talk to her about well...creating room for other people in her life.  I mentioned how I have always had a best friend (or two!) and how we did EVERYTHING together.  I left out the prank phone calls, experimental smoking, meeting guys at the mall that we followed to an intimate party of four and the time that we took two strange guys into our car right after a Ratt concert and then drove around the whole time looking for their car without actually getting to have any fun with them.  


I told her that there are things she can only learn from girls her own age.  That it's so important to have friends - a group of friends.  But I'll settle for one best friend for her.  It seems that everytime she reaches out her knighting wand, she chooses another child that ends up telling whoopers or having a home life that involves DCYS.  It's like I want to put an ad in the paper and  set her up.  I don't know if she is just prone to enjoying solitude and the company of such a kick ass cool mom like me, or if she comes off as strange to those around her.  Tough with epilepsy...sometimes you just can't tell.  Is it the personality? The medicine?  Do people with epilepsy view the world in such a way that others can't relate, due to any difference in cognitive abilities?  She is an odd child, after all.  But I am not really so typical either.  So maybe she just is a chip off the ol' mama and the kids in school aren't ready for that.  Or maybe they are and she is just not ready for acceptance.  


The factors make me dizzy.  But in telling her that I'd love her to get new friends in the coming year, she replied, "Like Jack from Statefarm?"   Yes, like Jack from Statefarm.  (See commercial above).  "She sounds hideous."


There certainly are reach outs though by others.  Such as when she performed in the Talent Show and took the stage alone to sing "Breaking Free" from High School Musical.  She received a standing ovation.  Or today...a fabulous break.  She didn't know it but during the award ceremony this morning, she was getting an award for steppin' it up for Chorus.  Her chorus teacher called me yesterday to let me know so that I could show up and let her die of embarrassment.  Front row baby....I'd be the one with the pom poms and t-shirt with her face on it.  YEAH!!!


But the reality of the end result of the continuous talk about seeking out good friends came down to her citing a friend she had years ago who barely calls her back, ever.  "I like Jordan and she's my friend.  NOW GIVE ME FIFTY PUSHUPS!"

Whoops

Sometimes it is simply amazing how that kid's mind works.  There are times where she is excited to get up and go to school and on those days, there isn't a problem in sight with a seizure.  She's waking the birds up on those mornings.  That was today.  Yearbooks were to be given out.  


The road to hell is paved with good intentions...and I bought a brick with my name engraved in it.  Last night, for all my writing of being careful waking her up and timing and circadian rhythms, planetary farts and feather dipping, I committed one of the major Boo Boo's in the epileptic rulebook for my Humanling.  She had been awake about 20 minutes prior asking if she could come out and sleep with me.  I told her that the rule is if the light is on, then no.  It means I'm staying up longer (probably playing Farmville and babysitting all my blogs) and that she can come out later.  So I decided to save her the wait and went in awhile later.  Remember last night's blog in which I stated that no matter how asleep she was, the magic words that promise sleeping next to mom wakes her up Just Like That?


She didn't wake up Just Like That. At first.  I asked again and she suddenly jerked open her eyes and screamed bloody murder.  (No chizz this time.  Just bloody. Murder.).  


With a consciousness entrance like that I knew we'd be stuck not lying down for a bit.  And so it went.  I walked her back and forth for nearly 10 minutes to try and stop the jerks that had started.  Eventually she got all angry at me because she wanted to lie down but I knew if she did, she would fall into a full fledged seizure.  The longer I can keep her on her feet, the better.  Finally she indignantly laid down.  And thankfully we'd been up long enough because there were a couple of minor twitches and then she twirled her hair through her fingers and fell asleep.


Those are the moments  I realize that most parents can take for granted their kid just going back to sleep.  Not so with my child.  She has to be monitored until her body can calm down.  


Tonight however, I will NOT be prematurely extending any offer to come out and sleep next to me.  If she wakes herself up while talking in her sleep, there will be a spot waiting for her. 

Mean Teacher Pinata for Sale

The last week of school is upon us...yeeee haw!!!  This is great because I don't have to wake my darling child up too TOO early on many days.  I work from home three days a week and so she'll only have to get up against her inner clock on two of those days.  Sort of like a reverse normal week during the rest of the year.


I don't know if it's her or the meds, the epilepsy, the moon, the stars, the shoe size of a gorilla or what, but she talks very often in her sleep.  Not the mumbling kind where you can't figure it out either.  If she ever gets married someday, she better hope she says nothing incriminating because her hubby will hear it ALL.  I can hear it from a room away as if she's awake, reading a script. 


She had seen on I-Carly (that show that makes adults look like bumbling doofuses that can't flip a light switch without the aid of a child for direction) an episode where this kid Neville says "Aw, Chiz!"  She has taken to this phrase as if it's an obligation.  To me, it's the kid equivalent of "Aw, SHIT!"  So last night, as if needing to read an entire football stadium, I hear "I need some Chiz!" from her room.  Ok, we don't need that kind of statement in public, Ever.  It doesn't sound like there is any profitable outcome from that.  So I went in, checked on her and asked if she wanted to come sleep with me.  Somehow, those words always drill right into her psyche.  She was up and in here as if she were moving before I'd asked.


But it makes things easier for me in the morning.  I don't have to listen for anything strange from the other room.  I put one hand on her so that I can feel if anything is starting.  This morning she was having a mild start to a seizure.  But because I could feel it, I told her to get up right away.  For whatever reason, this helps her.  It pulls her out of it.  My guess is that the brain now has competitive stimulation ... now she's standing, now she's walking, now she's navigating through the hallway.  Many times I will have to lead her through the house, back and forth.  Today was ok enough for her to do this on her own. And thankfully, most of the time she listens and just gets up when I tell her to.


Today she told me that she can stop a seizure sometimes and that it's like staring contest.  You just try not to move.  


Just the other day it was announced that 68% of patients with Juvenile Myoclonic Epilepsy (JME) become seizure free!  We don't know for sure that this is what my Humanling has but her neurologist seems to think so.  But because she was seizure shy during the last EEG, I'm not sure we can verify it.


For now, she has a pretty normal existence.  Except in some cases like where sleepovers are concerned.   She asks constantly about sleeping over someone's house.  And it breaks my heart because I can't put that on another parent or child.  As much as I want her to have a normal childhood, sleepovers are sort of out of the question.  She's tried her negotiation skills with me, since she is a Capricorn, after all.  "If I don't have a seizure for two months, can I sleep over so and so's house?"  
"Three months"
"Ok, Four months!" and there she goes upping the ante on herself, reminding me of the Bugs Bunny/Daffy Duck standoffs.  


An understanding teacher is key though throughout the school year.  I feel that hers has not been very supportive.  She's a first year Special Ed teacher and says really inappropriate things that make me want to stuff jalapenos in her mouth.  Last week she mentioned to Humanling, "How did you even make it to the 7th grade?" 


I've had talks with the school psychologist previously and we couldn't move her to any other classroom.  Next year I hope for much better for her.  As any parent would.


Time to for me to wind down now in the event that someone shouts out for more Chizz.

Mc and Regular Cruelty

"Mom, it's skipping again!"
"Maybe you should cast as spell on it."
"No.  You do it...."


And such are the usual conversations that go on around here.  The nights feel as though I should rent the Native American party package....one bonfire, one teepee with buffalo rugs, smudging....I usually have some flute music going in her room for the white noise effect.


 Coyote Oldman retired on us the other night by track 2 when it started skipping.  I think he needed a hiatus.  He's been in rotation for weeks now.


I have a feeling that when school is out next week I will have to honor a request to take her royal hiney to Burger King or Wendy's.  She's off on a new obsession in the last few days.  McDonald's french fries used to make her barf.  Burger King's has done it before too.  So she wants to induct herself as a science experiment and see if she can tolerate the fries there at all. I'll probably just pretend there isn't one in the area and go to Wendy's.  She can experiment when she's out of the house someday!


She thinks she's slick though.  She's nicely say to me "Mom, I think you need the night off..." and clearly you can see where this is going......"Let's go to Wendy's!"  


At the same time, she is furious with McDonald's for other reasons.  The McNuggets.  I've mentioned that we are vegetarian.  Only in the past year has she really been checking out one of the reasons why.  She watches a PETA video called McCruelty and of course it shows the degrading life of a chicken before it becomes a sanitized, cute idea of a fun lunch.  She wrote a speech tonight that she wants to say to her friends at school tomorrow.  We worked on it a tiny bit together, me only tweaking it where it sounded like she was "blaming" in her speech..i.e. See what you do to these chickens by eating McNuggets.  I suggested gently that she change it to "see how the chickens that are made into nuggets have to live".  She actually took the suggestion after balking just once!  I'm proud of her and definitely want to encourage her to say what she has to say if she feels it is just.  


While she was in school today I wondered if the hairs on her arms were standing.  The Emergency Broadcast System went off on the television, and you know, the EBS is #2 on her Obsessions list.  I'm terrified if it comes on at night that she'll hear it subconsciously and wake up freaking out.  Even if it's on mute! 


Last night we decided to have a Word Search contest.  We both got a clean sheet with letters on it, ready set go'ed and had a race to see who could finish first.  That little sh*t kicked my ass twice.  I won once and her reaction made me feel like I butchered a bunny in front of her.


I couldn't stand her teacher this year.  It isn't anything personal for but a first year "special ed" teacher this lady may as well have written "you suck" on the desks in crap.  I know she taught Humanling some things.  But sometimes these little anecdotes get back to me and they really piss me off.  Today's theme was "How did you ever even get into the 7th grade?"  She said this to my daughter.  I complainedI in the beginning of the school year that I didn't think she was the right teacher for my daughter when she bitched about how tiny her handwriting was.  She went on to say that if she could get a job writing on grains of rice, she'd do really well.  Then asked me if I could understand anything that she wrote.  


Why yes I can.  And on her IEP is physical and occupational therapy.  If you have a problem with her handwriting, take it up with the therapist to work on it.


She had me (frothing) at "Hello".


My answer of course to How did you ever even get to the 7th grade would be How on earth did you get to be a special ed teacher???  


No sir, I didn't like it.


But I've heard on the DL from someone within the school, that I am definitely not the only parent barring fangs at her. 


  But we have a whole summer to grow and reach and I have something irreplaceable, whether she can or can't write big enough, whether she can or can't do an interesting book report or whether she can or can't work out a math problem that a girl her age should be able to do - I have an incredibly special experience and relationship with this human that I am grateful for numerous times a day.  

You Get An 'A' in Hitting my Funny Bone!

One in 26 may develop epilepsy in their lifetime.  My work from home day, complete with hot coffee and a yummy croissant stuffed with an acre of cream cheese....heavenly.  I had Morning Joe on as I usually do.  And then I heard them talking about epilepsy, which of course had me turn around to pay attention.


Susan Axelrod was on talking about the latest news dealing with this disorder.  A parent can't help but cry when another parent opens their heart about their epileptic child.  In this case, that would be Mike Barnicle who is also on Morning Joe.  It is amazing how many people have this disorder and it seems that there is a giant hush over it.  I suppose it isn't something we exactly wear on our wrists (Oh wait! We do!  Humanling has a fabulous epilepsy bracelet!).  But in general it feels to me to be a more quiet affliction.  One that people don't always want to admit to dealing with.  


I worked with a man recently who was temporarily stationed with us at work.  I was training him and therefore sat with him all day long.  You get to know a lot about a person in this way.  I mentioned my daughter's epilepsy and he said to me, "Only because you mentioned it, I will share with you that I also have epilepsy.  But I don't want anyone else to know."  His seizures were more petit-mal in nature and he said that he could control them in such a way as to induce pleasurable euphoric effects - especially when listening to music.  We would trade music back and forth daily for awhile - a Song of the Day to introduce each other to new things.  


But it was obvious that there was something 'different' about him.  And everyone else noticed.  It would be mentioned that he didn't seem to be "all there".  Only I knew about his disorder, and I felt bad for him.  How people viewed him really haunts me.  This is how people may view my child someday....or now even.  She isn't stellar in school.  In fact, when I see people post their kids getting awards for honors or sports or whatever activity, I realize that if they had an award for the child who tried really hard to not do any work, Humanling would have a wall dedicated to them.  I have and am still learning to accept what is....and her perfection in who she is, not her perfection in standardized tests.  


She doesn't understand schoolwork quite as easily as her teacher this year would like her to.  She feels that her teacher actually doesn't like her, and to be honest from what I've seen, I can't say that I think much differently.  She is in special ed....but will be integrated into the mainstream...the faster pace....next year.  


She learns things but sometimes she has unlearned them within a day. Especially with math.  Sometimes I wonder if it has anything to do with the brain's memory due to her condition.  She used to have petit-mals herself, and still gets them in the sunlight.   Her teacher wasn't very sympathetic.


And so it's a constant guessing game.  Is it the meds?  The disorder?  The teacher?  My child? Yet she will learn something if she is obsessed with it.  The things it seems she has learned the most may really just be the things she learns from me.  We share a sense of humour, although hers will blossom into the R versions later on.  I try to grab every teaching moment that I can.


Case in point: She says things about walking around outside alone.  My solution:  To bring up Etan Patz.  So I have a dramatic flair when I'm making a point!


She may not always be great in school but she always manages to make me laugh on a daily basis.  I hear some pretty zany things from that mouth of hers and while other people may be grasping for the punch line, I am beaming with pride, that she is perfecting the trait of specialized humour, that my dad passed to me.  

Fire Alarm Shaped Cupcakes

We had a clear couple of days which is always welcome.  Hard to believe Humanling used to go for six months without a seizure at one time.


Our guests came and went and Humanling's room went from a major disaster to a slightly not as major disaster before they got here.  Her Auntie Mame brought her a tiny 2012 Hess vehicle which was quite the trophy to receive.  Whether or not it has to do with her condition, Humanling has a few obsessions.  Hess vehicles, fire alarms (major fear), tornadoes and emergency broadcast interruptions on the radio or television.  Everything but the Hess vehicles are basically the boogeyman for this 13 year old.


She'll actually go on YouTube and look up fire drills and emergency broadcast system videos (to which I ask posters, Why?  Why are you posting this crap? When did you stop in your tracks and note the light bulb above signifying this breakthrough of an idea?)  Part of me thinks this is great!  She's facing her fears!  And part of me is like, why are you causing obsessive nightmares for yourself so that I have to be woken up all night long while you imagine that a giant fire alarm is chasing you?


On her IEP at school, they used to list as a requirement that she be on the Fire Alarm Promo list and get the heads up ahead of time.  Then a teacher would hold her hand and walk her out first.  They don't do that anymore for her thankfully.  It did get her to score a hand holding event with the boy she had a crush on though at the beginning of this school year.  The story goes that he held her hand as the alarm went off and then his shoe came off.  I wasn't there. That's all I got.


This week her newest priority is for me to take her to Burger King or Wendy's for "some girl time, you know...just us, and lunch."  Hm.  So living together, Just Us, or doing puzzles together at night or playing Monopoly or going to the deli for fresh mozzarella sandwiches is not Girl Time.  Once you enter the realm of the King, you've entered Girl Time.  She did fess up that she just wants to see if the french fries still make her barf.  She's gotten sick in the past from McDonalds or Burger King fries and deep in her soul, she needs an update.


We had some cupcakes on hand from the local bakery for the special occasion of guests.  Tonight she had the last of hers and left the empty box in the fridge.  It looked like a raid.  


She brought home a flyer to sign up for soccer for the next school year.  Things like this make me so tentative.  On one hand, I envision her a super star...yeah!  She's got epilepsy AND she can shoot a hole through anyone to make a goal.  Reality though...the sun bothers her and being stuck in the wrong sun spot will freeze her like a hologram and half the time I have had to physically nudge her out of that space.  I don't really know how she does on the playground in school if she forgets her sunglasses and hat.  


Right now though, she's asleep, listening to a CD because I feel that the right music all night long is like white noise and blocks other sounds out so as not to wake her.  And I'm about to go into her room to ask Coyote Oldman to weave those dreams of fancy, well dressed fire alarms a little quieter.  

It is indeed a stereotypical lovely nearly Summer day!  I did run into Humanling's room a couple of times thinking that I heard a noise, but really, sometimes the sound of the guinea pigs drinking their water from the nozzle is what is waking me up.  Bad boys!  No drinking between 5am and 7:30am!  


She's been a bit hot today, poor thing.  We're on the second floor and yayuh, it is hot up here. Especially when I decide to cook.  But I made her favorites...deviled eggs and kale chips.  We're having company later so I had to boot her out of the refrigerator or else she'd probably eat an entire half dozen eggs by herself.  Since embarking on this "teenage" thing, she eats like a small boar and remains a rail. 


Today I like to remain some cute things that she does or says.  Like the other day when she was wearing this beautiful brown dress with blue swirls in it.  Amazing what color can do to enhance already existing beauty.  So she's sitting in the recliner, but damned if I can yet teach her to sit like a girl while wearing a dress, which is probably why she owns so few.  So I said to her "oh that color looks really good on you!  It matches your hair!"  She replied "What, the underwear or the dress?" 


We can't blame it on bad parenting when kids don't grasp the better way right off.  My mother is probably the reason why I resisted being any sort of neat freak for decades.  She'd clear a plate away from in front of you if you weren't looking.  I become rather expulsive as a result, but it's not her fault. It's who I was.  Humanling is a lot like I was in some ways....resistant to neatness.  


But the other day I called her doctor to hear about some blood work that we'd gotten done...extensive since she'd been complaining of ritualistic belly aches.  She's like that anyway.  She relishes telling me every day that she thought she was going to "puke her guts up all over the floor" in school.  This is an absolute delight for her.  So this morning she started with her belly feeling off and I immediately grabbed my invisible mike and addressed my audience.  "Folks, Humanling has yet ANOTHER bellyache.  What, praytell, could be the reason for TODAY'S bellyache?"  It got a laugh out of her and that's when I know she really isn't that bad off.  I put her through tests like that because she seems to enjoy being sick. So I make jokes and if she is really not responding, shit's going downhill.  


So the nurse mentioned that in her bloodwork there was a flag on something called an ANA screening.  Wha's that???  Huh?  She said it signifies rheumatoid arthritis.  That makes sense to me.  She had Lyme's and was treated for it.  So maybe this is just an elevated marker?  I don't yet know.  What I do know is that the doctor's office, busy as they are, have not called me with the info regarding the bloodwork.  Ok, that's unfair of me to say.  I actually am really bad at checking messages on my phone.  So maybe they did call and I missed it.  But still.  So the doctor is still supposed to call me with an explanation about this "red flag" status.  Man.  I can't have her on another round of doxycyclin.  That was barf Russian Roulette.  You never knew what day it wouldn't work out...and that lasted for a month.


The child has been outside with the downstairs neighbor's two year old.  She just came up to bring back a glass and spoon that I gave to her filled with "italian ice" ... really it's 100% juice that's been frozen.  She grabbed me and kissed my nose. My reaction was "Oh My God.  I think you filled my nostril with saliva."  


So yesterday morning we were chilling out doing our parallel playing in the living room.  I took control of the tv and put "I Love Lucy" on in the background. She couldn't help but peek and see what was up.  Lucy's antics are so freakin' hysterical.  It fills me with pride to pass down something so classic like Lucy.  Only as we watched I noticed that Lucy's cry is just as horrible and annoying as Spongebob Squarepants' laugh. No really. Check for yourself.  Out of respect I won't even post a link to either.


Today has been a mostly lovely day.  Humanling has planned a surprise for our guests later (they are my co-host of our show, Scorpion Equinox and her boyfriend, who is quite the author and poet).  She wants to dress up in her concert clothing and play We Wish You a Merry Christmas on the keyboard.  I think she should learn "Axel F" but whatever. 

Saturday.  A day to sleep in finally.  I was fooled though - I woke up at 7:20ish to my parent ear alerting me to Seizure sounds.  I ran into the other room to be sure that Humanling wasn't hanging off the bed - she is in a loft bed that was a gift to her and once was half hanging off during a seizure.  She wasn't.  But I usually take the blankets off her and make sure that she can't get twisted up in anything.  I don't know how other parents handle seizures, but I talk to my girl during.  I tell her it's going to be ok.  I tell her that I'm there, that I love her.  I stroke her hair, her legs, her arms and try to be comforting.  Maybe it is comforting to me more than it would be for her.  But I follow the rule of not knowing what the subconscious hears, so better to err on the side of positive statements.  I try to keep the "Jesus Christs!" under control.  


When the seizure was winding down, I noticed her thumb stuck in the collar of her shirt.  I hoped that she hadn't sprained it or anything.  I have a great respect for the strength of the body during a seizure.  It didn't appear swollen.  I usually re-position her body afterwards as well.  Make sure her spine isn't twisted, her neck looks like it's in a comfortable position, her arms in a natural position.  I had a guest on my show once (Scorpion Equinox) who cured her own epilepsy.  She had told me that the neck needs to be massaged because it holds a great amount of stress and tension there from seizures.  That made perfect sense to me.  Sometimes I actually remember to do this for her.  


When she got up awhile later and came into where I was, I let her know that she had a seizure, which is what I normally do.  She said that she already knew.  I asked how, because I'm always curious to know what the answer will be.  Sometimes the sore tongue is a dead giveaway.  Today it had nothing to do with her tongue.  She said she felt it.  I asked her further how did she feel it - what did it feel like?  It's rare that she is conscious enough to feel it.  She said she felt the shaking.  Did it hurt?  No, it didn't hurt.  


Well thank God for small favors.  It doesn't hurt.  Unless she bites her tongue of course....then later on she has a hard time with eating for a day or so.  


For the rest of the day she acts normal.  Although on a school day, when we're trying to get ready to get out of the house early and she has a seizure, she seems to be in a bad mood.  


I find that immediately I start analyzing the day before.  Did she have dyes?  Too much sugar?  Not enough water?  Too much activity? Excitement?  Gluten? What happened?  How can I actually even know?  


But I bet if she had been sleeping with me, it may not have happened.


Epilepsy in this house involves a lot of woulda, coulda, shoulda moments.  Although none of the projected scenarios can be founded.  


The rest of her day was fairly normal.  She played a song for me on her keyboard that I had no idea that she even knew how to play....without the sheet music.  She even dressed up in concert type clothing.  She finished her dinner before me tonight, ran to get dressed and played Christmas songs for me on the keyboard as I slowly, extra slowly, finished my dinner,.  


At some point during the day she showed me how she could even play music with her toes.  


But she went to bed on her own, as she usually does.  She tries to stay up slightly later than usual but is one of those children that is affected by time.  Her body tells her that she can't stay up any later and against what she really wants to do, she has to give in.  


I am grateful that although she has epilepsy, she doesn't at this time, have it any worse.  

No Calls Please, I'm Frolicking

The first words out of Humanling's mouth when I told her it was time to get out of bed this morning were, "I'm busy frolicking."  Which unless the Emperor cannot see 'frolicking', she clearly was not.


Getting her ready in the mornings for school can put a sense of dread into waking up once the birds start their song.  With the windows open, the birds sound beautiful, but rather loud.  And I can't have loud noises waking her up - especially in the wee early hours of dawn.  So I close windows.  Then the cat decides that 4am is the norm for deuce dropping and her claws in the litter box echo down the hall, sounding like an angry teacher dashing punishment across a chalk board.


I am usually at my most tired during the dawn hours and am hoping to sleep soundly for another hour or two.  But it is also here that Parent Ear has to perk up more than usual and listen for any tell tale signs of a seizure happening.  


Sometimes I jump out of bed only to realize that the noise I heard was one of the guinea pigs getting water out of their bottle.  I fear waking her up with all my mini fire drills, popping out of my bed every 20 minutes to check for sources of sound.


With Humanling's epilepsy also comes a more needy learning curve.  She has an IEP at school to protect her from all kinds of academic unfairness.  She is to get more time to take tests, she gets physical and occupational therapy and also a locker with a key instead of a combo. Special Ed classes don't look anything like they did when I was younger.  I'm not sure if the stigma sticks but I don't hear too much about it.  Then again, I don't have the pipeline to the lunch table when kids might have some opinions about special ed kids.  


Recently Humanling completed a book report.  This morning she was fretting that she might have to read it out loud and what if someone asked a question?  I asked her what was wrong with that....she read the book, just answer it as best as she can.  And then she said "But I'm not a good listener".  And it's true....she really isn't.  I don't know if it's a good thing that she knows it.  I gave her one of those moment pep talks about just listening closely to what a person is saying.  


A frequent worry for me is how other kids perceive her.  She was in a talent show this past Spring and sang a song from High School Musical.  Her friends were insane with the clapping and various bouts of "Whoooo!".   So it seems like the kids in her school are not the bullying ogres of my day in junior high....but then again, they hardly wear the t-shirt stating that they plan to give your kid a swirlie when no one's looking.


There is a class trip to Washington DC next year....you know the one that most of us go on at some point.  Mine was in 5th grade.  Theirs is in 8th.  She's already asked me in all excitement if she can go.  And this is where the dilemma comes in.  I tried to gently tell her that she might not be able to go.  What if she has seizures on the bus in front of her friends?  What if she gets bus sick because they stop for the degenerative dollar menu at McDonalds?  We're vegetarian.  She has stomach aches on a regular basis.  


I'm terrified that if she ever has a seizure in front of her friends, they will either imitate and make fun of her behind her back or - another equally great option - someone will be traumatized by the sight of it.  What if they are afraid of her after that?  What if whenever she walks by they make electrocution movements?  I can't punch children.  And it's illegal to hire Scut Farkus to do it for me.  


Besides that, a solution of understanding is what would help.  And maybe I don't give these smiling cherubs enough credit.  We usually don't.  

The Wires Come Off

It'd be great to get to writing without distraction since it is 9:30pm.  But my willful child has decided to meander out here, her face all screwed up trying to think hard of an excuse as to why she needs to be out of bed.  This is a normal occurrence here in this house.  Now I can't say for sure but it seems that even though her first big ticket seizure happened with me next to her in the bed, lately it seems like she is not having them if she is next to me.  Some mornings if I hear her stirring before the Seizure Witching Hour, I'll ask her to come lie down with me.  She's been fine with that set up. 


But now that I've said it out loud, I've probably inadvertently petitioned the universe to test the theory.


And naturally, since she was all hooked up with her 24 hour EEG all night, there wasn't a seizure to be found.  They are in fear of recordings...similar to how Native Americans believed the soul would be captured in a photograph.  


On the way down, the Humanling insisted on doing the usual music bargaining - making sure to start before we even backed up to leave the driveway.  Miranda Cosgrove.  Seeing that I have heard these songs over and over again, I counter offered - ONE song.  And it can't be dreary.  


She got one song.  And it WAS dreary.  I cringed and then noticed that my left foot was tapping the floor to the dreariness of the beat.


She also mentioned to me what her costume is going to be for Halloween this year - a female prisoner.  Because that's the theme in the Lady Gaga "Telephone" video.  Great.  How about a giant padlock instead to keep you in your room on Halloween?  


We were late getting out the door to have the wires removed and the woman removing them was almost fully direct in verbally spanking us.  Almost.  She more or less complained loudly, letting us know that this could really alter the orbits of the universe.  


Seven minutes later we were outta there!  


So she had a two day hall pass from school.  And spent a lot of time today making up for not being on the laptop yesterday.  


We played more Junior Monopoly tonight and ended up in a deadlock.  I played Eddie Rabbitt's "I love a Rainy Night" for her and she seemed to like it.  So I upped the ante to "Footloose" by Kenny Loggins.  I don't know how the two are related but in my head it's a natural progression.


For now she's gotten her way (sort of).  She is laying down on my bed under the condition that if she was not sleeping within 10 minutes of her head touching the pillow, she is sent back to her bed, no questions and no bargaining.  It worked.  

Pull up with some Banana Bread for the Backstory

I will be super surprised if I can get through three sentences before this kid gets out of bed, finding that she is one hug devoid of going to sleep comfortably.  My Humanling is thirteen and tonight is attempting to sleep with the equivalent of five packages of Twizzlers, all glued together, attached to her head.  Today is the 24 hour EEG that she has done yearly.  It looks terribly uncomfortable to try and sleep with.  

This is the first year that she seems super self-conscious on the drive home.  In her mind, Justin Bieber was in every passing car, guffawing at the wrappings around her head that hold the wires securely.  I swore that I took back roads.  But somehow, Justin knows such roads in my small town.

Humanling's seizures started out early on, maybe when she was four years old.  Only back then I thought we had the cereal prize equivalent of seizures....they were petit mals.  Not too bad, definitely not enough to scare me.  Probably one of the only ways we figured out that she needed a neurologist was because she would drop sentences and then wouldn't go back to pick up where she left off.  As if it never existed. We also joked that she was a vampire since the sun seemed to bother her.  So she was put on Zarontin.  For years.  Eventually, Lamictal (Lamotrigine) was added.  

We went on like this for years.  I read forums, and played with diet.  Humanling is already a lifelong vegetarian.  Could I have brought this on with diet?  The neurologist emphatically states no, although I do believe diet can have a say in things.  So we checked for sensitivies....gluten, dairy, peanut, the works.  We both tested positive for gluten and dairy, so I tried a whole alchemy of foods to substitute.  She would have raw goat milk mixed with heavy cream and the most simple chocolate syrup for flavor that I could find.  She ended up being a social pariah in school when it came to lunches or parties.  

Being a single parent, she would sleep with me often.  One morning on a weekend when she was about nine, I woke up to her in a full blown convulsive seizure.  She had hit her head earlier in the week hard enough to warrant a doctor's visit.  They said she was fine.  Most people have a tiny freak out inside when they see their first seizure.  Especially if it is your child.  

And thus was born a brand new fear.  Now they weren't benign, cute little petit mal seizures (which of course come with their own damage) but now who knew when the next one would strike.  I couldn't sleep for weeks.  

Eventually though, as with many diagnoses, we get used to it and learn to live with it as best as we can.

As it turns out, Humanling has seizures that creep up on her as she is waking up.  This could be from a nap, from something suddenly waking her up in the middle of the night - such as noise or most usual, in the form of showing up in what I've dubbed her Witching Hour...between 5 and 6:30am.  

They also occur in car rides if the sun is flickering through the trees as we pass.  But these are, so far, the only two conditions in which to induce a seizure.

So there are baby shades in the car on the windows and she wears sunglasses and a brimmed hat.  Hahahah....yeah, ok.  That's what she's supposed to do.  That's why the baby shades are there now....for the frequent forgetting of her hat and glasses.  

So still, I am lucky for now in the sense that they are predictable.  For now.  

So what do we do for a day where she can't use a cordless phone, cell or get near a wireless laptop?  

She popped open a San Pelligreno, kicked back in a chair and played her DSi for a bit.  

Then there was the fine art of Die Balancing:

Then we moved on to creating a banana/blueberry bread that I've mean meaning to try.  She stirs, I measure.   She licks the spoon.

And voila....this the the BEST smelling banana bread I have ever known.  Too bad we were both too full from dinner to try it just yet.  But I can vouch for the scent!

Now that I look at it again though, I think I'll slither into the other room and give it a taste!  

Tomorrow morning she has the wires and bandages removed.  Then it will be a long, hot, glue melting shower for her.  And another freebie from school.  

Now she sleeps in the other room as Coyote Oldman plays on her CD player.  I usually throw something in at night to block all other noise if possible.  I'm going to go try that bread now!