Tuesday, August 14, 2012

Tongue, it's Time for your Encore




The power of petitioning the universe. 

I’m not terribly superstitious.  Unless you put shoes on a table.  Or walk past money and sniff at it as you pass because it’s “only a penny”.  (To me this signifies telling the universe that you don’t care or appreciate any flow of money it sends your way).  Or say things out loud, including discussions about those things that you Don’t Want to happen.  It’s bad enough that your mind went there, why put form to it and allow it to float from your lips like a helium balloon….up and away somewhere higher to the ears of the All.

My mother asked me last Friday how Miss Humanling was doing with her seizures.  I replied that she’d been doing pretty good this summer.  She hadn’t had one in too long…or too many.  She had one the night of the carnival.  But other than that, ok for the most part. 

Cue Saturday morning before 7am.  I don’t know how I wake up, I just wake up right before her seizure starts.  It always looks so stressful on the body.  Everything is as tense as it can get.  When I saw blood drip out of her mouth I knew she’d have to deal with the sore tongue for a few days. 

Later that day she seemed more “blinky” as I call it…more “out there”.  Warning signs.  Even though it was nearly 6:30pm, I told her she should take a nap when we were done with the laundermat.  I usually don’t advocate late naps for her because I don’t need her more awake than me at midnight.

So she put on her dandy purple eye mask, only too happy to be granted a free pass to a nap!  And fell asleep.  That’s when I allowed the new little kitty out to romp around.  She eventually made her way onto where my daughter was sleeping and bounced all over her, waking her up.  With the eye mask on I couldn’t detect if it was going to end up giving her a seizure but didn’t really think much of it since she’d just fallen asleep not long before. 

I decided to wash dishes because sometimes, that’s just how we pass our time around here.  Throwing the water on, I waited for it to heat up and then heard noise from the other room…I peeked and saw her in a seizure, in the recliner chair.  Leaving the water on, I ran in to make sure she would be safe from falling out of the chair.  Her body seemed even more tense than it had in other seizures.  And as I thought it to myself….don’t let her bite her tongue again, since it was raw from the morning, there was no avoiding it.  Tongue mash.  Lips blue.  The blue lips don’t happen too often.  Her very first seizure produced such an effect, which is really horrifying to see.  I watched to see that she was breathing okay, being grateful that breathing is automatic. 

Had I mentioned that the sink has been clogged?  Waiting for the end of the seizure and trying to count time, I wondered outside of myself if the water was going to overflow and add further to this precious moment.

She woke up later on, of course unawares of the seizure.  Unfortunately, her tongue was so sore and swollen that now she earned a Lisp of Honor that she’d carry for a few days.  I feel so bad when this stuff happens.  Her tongue hurts for days, making it tough for her eat or not sound drunk at times when she speaks. 

She doesn’t seem to notice the change in speech, which is good.  And this gives her an excuse to get lots and lots of sympathy from mama (which usually results in fun or yummy things!)

Friday, August 3, 2012

Yours, Mine and Ours





For some reason, whenever I see someone in a movie have a seizure, it makes me very sad.  Not just "Oh that sucks" sad.  But "Oh....that could be my child" sad.  And then because I understand more than what meets the eye because it's so close to me, it makes it tough sometimes to even look at the photos they post on the epilepsy websites of people.  You see real people...(yes, as opposed to the titanium people they normally picture on there).  You can look into their eyes, which are usually smiling along with their mouths.  And end up imagining what they go through...just like your own child.  There is a good moment, there they are smiling.  But there is this thread that weaves through them, each one of them, to your own child.  It makes me want to hug every single one - and their mother. 


I wonder if other parents of epileptic children, sprouts or oaks, share this with me. 



The Invitation of Meltdowns

Effing birthday invitations.  They are rare around here so Humanling is ecstatic to have gotten one from her friend that she hasn't seen in forever.  The festivities will include swimming pool, trampoline and most importantly....CUPCAKES!  It is a dual party for a brother and sister who's birthdays coincide in the same period of time.  


Even though we've discussed it more times than Mercury has rotated the sun for all of time thus far, and my consensus is that a sleep over is not safe, her enthusiasm burst from all of her veins....
"Well???? CAN I GO???"  
"Yes, you can go."
"Can I sleep over?"
"No, I don't think it's safe."


{exits stage left and goes into bedroom, most likely with the door shut}


Eventually, because in an endearing way, puppies and kids, they forgive so easily, and we don't have another person for her to play off of here so it's the end of the line for strategy, she comes back out.  Hugs me, hands me the invitation.  Walks off and slams her door.  Are we upset or not?  Comes back out.  says she is upset (glad that's settled!).  I explain the good....but you can go to the party, you can swim, be on the trampoline, eat the cupcakes and be with your friend til late.  Then you have to come home.  The part about sleeping over and more than likely having a seizure (probably due to excitement and diet that day) in front of a gaggle of 13 year olds doesn't seem to phase her.  She has not ever seen a seizure.  


This is something that I've thought about for awhile now.  She's old enough I think.  If she didn't have epilepsy, she might see someone else in life have a seizure.  So, in order to show her the importance and mechanics of a seizure I wondered if finding one online might be suitable.  Her neurologist seemed horrified by the idea.  Well I'm horrified that the neurologist doesn't think one's lack of water consumption affects seizures.  So her opinion almost doesn't count.  Why expose her is the neuro's take.  Well, she blanks our during a seizure obviously.  Therefore, she doesn't understand why I am a helicopter parent with so many situations.  She doesn't realize anything except that once in awhile her take home gifts from Seizureville are a headache or a bitten up tongue.  She just has no memory of these events and is under the impression that I've been schooled in the Mom From Hell School of Hovering.


I'd bet milk chocolate on the fact that when I finally get her home that night, she will be happy to be in a quiet, low key situation where she can just relax and go to sleep and not remember a possible seizure around me instead of a bunch of kids who will make it feel like pressure to stay awake all night.  I'd bet dark chocolate on it but there's a minuscule chance that I'll lose.  



Wednesday, August 1, 2012

Wearing a Gallagher Bib





I think with any affliction or illness, just because you've been around it long enough does not mean you've honed  your common sense in the fine art of Cause and Effect. 


As I repeat (ad nauseum) that Humanling shouldn't be left to get up alone in the morning (just in case) sometimes  it happens.  There have been many a morning she can get up on her own and may need a small adjustment period instead of the Family Walk up and down the hallway.  I usually can't differentiate why some mornings work and some don't, although being able to sleep naturally without being woken up seems to be one factor.  Meaning, get a freeze gun, put the whole neighborhood, sky, early birds preying on the worm, car horns, my animals, sneezes, and thunder on hold, until she can wake up on her own.  This makes school days nearly unbearable for me.  Getting her on time to the bus stop is a 46% chance event with me driving the rest of the time.  If she has a seizure while I'm trying to get her to wake up, then the reset button is hit and I have to let her sleep it off until I can get her to school and me to work.  


I haven't actually seen her have a seizure in about a month (yay!) but I am not petitioning the universe for one to shake things up (no pun intended).  (Really).  She says that she had one at her dad's but if she can't feel an arm jerk when I'm looking at what appears to be an awake person, then that's a world I don't make the height requirement on.  I'll never get inside her head to know what she actually feels.  


I was doing a great job of tiptoeing around the house this morning to get the morning chores down.  I even wore socks as part of my Superhero ensemble of Shhhhh Mama.  


While I was in the kitchen, I suddenly heard a thump (which always puts the heebies into my heart) and then she strolled into the kitchen.  This isn't trustworthy though.  She appears fine.  Only really, I have to give it time.   That's why she fell that one morning...I paid my full subscription to False Security Hourly.  I watched her for a moment or so and then ducked into the bathroom for less than a minute as I heard her open the fridge door, get a glass and pour her rice milk.  Then the glass hit the floor.  


She was fine.  She had a case of the Arm Jerks.  She went to drink and I'm assuming the glass fell out of her hand.  I asked her how it hit the floor and she said she didn't know what happened.  


Sigh.  She's fine the rest of the day (unless the sun nabs her through the trees on a drive in the car).  It's just that waking up is so criminal to her system for some reason.  I haven't found anyone who can really explain it to me.  To keep her system engaged, I had her attempt to clean up the mess (try that with your kids, folks!  Tell them it's for their sensory good to Keep them "engaged"!)  


I explained to her that in the mornings, she has to wait for the jerks to stop (you know, those jerks that she doesn't even know that she has) before she can try to hold a glass of liquid.  And all before my coffee!  The humanity!

Tuesday, July 31, 2012

The Slumber Party Dilemma

The joys of getting to sleep a little later in the summertime can't be appreciated enough!  Seeing as my girl's seizures can happen as she is waking up, the more sleep she can get, the better.  I'm having to do slightly less walking her around when she first wakes up, although I still have to do it.  I'm pretty sure that I remember her neurologist telling me that she's never heard of stopping a seizure at all.  I don't claim to stop a seizure.  However, I can see the signs of one coming...the arm jerks, the head twitches.  If I can get her on her feet and give her brain stimulation that it has to deal with, this method has worked for us 99% of the time.  Now that's if she can stand, which means that she hasn't gone into the seizure yet.  If I leave her to lie there on her own, she will have one.  


This causes me to go back and forth on the issue of sleeping next to her.  I'm currently single and Brad Pitt has not requested our special night alone.  Allowing her to sleep next to me ensures that Parent Ear turns into Parent Sensory.  I can feel her moving and can feel a twitch generally.  


What I can't do though is explain to her what she is going through.  She turns into a pint sized Hulk whenever I get her up on her feet.  Too tired to deal she gets all no nonsense CEO on me. I'd be lying if I said it didn't get to me.  But I realize that she doesn't really understand what's up.  She has never seen a seizure.  She's as present as a sewer grate when it happens, so how could she?  While her arms are jerking and I have her still somewhat coherent and work on bringing her out 100%, I'll ask her...did you feel that?  Your arms just jerked....did you feel that?  And the answer is pretty scary...."no".  


Her speech during this time sounds like she needs a breathalyzer.  She slurs and drops sentences.  So that leads me to the annual jackhammer event of the year: a birthday party for one of her friends, that involves a sleepover.  My Hammeress hardly ever gets to enjoy what most kids and parents take for granted.  I slept over so many houses and hosted mine in return as a kid (I happened to be friends with a bed wetter...and believe it or not, it didn't dampen my outlook on sleepovers!  Get it??)  In our case, sleepovers become a bone of contention.  She doesn't have it like I did.  Once we tell parents about the epilepsy, you can see the worry and nerves starting to cinder on the spot.  I don't blame them.  If it were me, and I didn't have any experience with epilepsy, I wouldn't feel too bad about expressing my inadequacies to do with handling a seizure.  But she thinks of herself as a perfectly normal teen.  One that can just sleep at someone else's house.  


She needs sleep.  Sleepovers alone and with a birthday party stack up against her.  First, the excitement alone can cause a seizure.  Next, lack of sleep of course!  It's a sleep over but not for sleep!  Being in a strange house, eating too much junk food are also big contributors to set up for a seizure.  Let's not forget the stigma attached to kids if they have a seizure in front of other kids.  This may or may not happen but if kids are the way that they were when I was child, it's inevitable.  


So while I have set her up for a most probable "No", I have not completely given my ruling on this.  Many times we can put her epilepsy one row behind the forefront of our minds. At the same time however, conditions we need to set are always one thought away.

Friday, June 29, 2012

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

Thursday, June 28, 2012

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.