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.