Wednesday, April 30, 2014

Different Lenses

Between my world of emotionally troubled kids at school and my world of epilepsy and its tentacles at home I think I have a skewed view of the world.  That comes with years of one foot in either of those worlds...and I have 23 in the former and 17 in the latter.

My kids at school are aged 12 to 21.  Most are bright and all are hurting.  Some have arrest records, some are having sex at 13, some are traumatized and others are traumatizing.  I counsel one young man I like very much who is cared for by a woman to whom his mom turned over custody in a grocery store when he was three.  Terrance has wicked seizures, just wicked.  He has two shattered hips from a tonic clonic in which he did not fall: the fractures were purely from the seizure.  He doesn't take his meds, not regularly.  Terrance is shoplifting and hanging out on the street.  A judge attempted to "place him" but the facility wouldn't take him because it would cost them too much in medical care and supervision.  My son has a cakewalk compared to Terrance.

I see a young man of 13 who is ravaged by mental illness and is the dearest boy I know.  I have been counseling him for five years and he is becoming less and less functional.  He yells and demands and bangs his head when he is frustrated.  He cannot sustain himself for a school day or dinner out with his family.

Bri is a 17 year old alcoholic, bulimic,  depressed young woman who sees the world through yearning eyes.  She keeps a razor by her bed to remind her of where she does not want to go.   Her parents keep the fridge locked.

My very dear friend and colleague at school, who is my teacher-hero also has a challenged daughter at home.  She tells me she feels like she is teaching middle school inmates.

Social skills, social graces.  Aspirations, proposals and graduations.  This is the stuff of the typical world.  Through my lenses though, the typical world is the world of challenges, differences and small successes.  The baby steps, the one day without a seizure, a drink or an arrest.  These are the kids that I love.  I do, I resent my town newspaper that profiles a graduating senior every week from my sons' class.  They trumpet the certifications, the athletic awards and the college acceptance letters.  Not one, not one, is ever of a differently abled senior for whom one day without binging  or for whom making a new friend should be the headline is ever profiled.  Shame on them.  For these are the kids who deserve the praise and the love.  Even if it kills us.

PLEASE add your child's headline below in the comments section.  Do it anonymously if you'd like. Add pictures!

Monday, April 28, 2014

Sleep

I have a lot to say about sleep.  I can talk about menopausal lack of sleep, melatonin induced sleep, seizures during sleep, administering meds when I'm half asleep, sleeping alone, sleeping on my feet...I have a lot to say about sleep.

Cesare is a nocturnal seizer.  That's not a word, by the way, but should be.  He seizes almost 100% at night.  He does not have tonic clonic seizures but he is partial to clusters.  He really likes clusters. So when he gets rolling, I need to give him Ativan to stop the clusters or if really, really bad rectal Diastat..though he hasn't needed that in years.  What happens when you cross a woman "of a certain age" with many nights of interrupted sleep?  I don't know.  What was the question?

My head is frequently scrambled.  That's hard when I work with emotionally disturbed teens.   They demand so much, rightly so.  But my memory is just awful.  With my middle schoolers, I often hide my bamboozlement behind an oft told tale that I am 104 years old.  (When I recently slipped and told them about turning 50 one little cupid said "I KNEW you weren't 104!!"  Thank you.)

I have a confession to make: I yearn for a cold.  A rip roaring, coughing, stuffy nose, oozing cold. A fever would be icing on the top, but it isn't absolutely necessary.  Know why?  Nyquill Night Time Cold Reliever.  It is a legitimate way to get a solid nights sleep.  It is a note from a parent covering a skip day at school.  It is a Federal Holiday when work is oppressive.  It is a snow day, a vacation day.  It is Queen for a day.  I have no guilt, and let the chips fall where they may.  This may be foolish, and maybe foolhardy.  But once in a while, I just need to sleep. So please, cough on me, and bring on the Puffs Plus and the licorice spiked Nyquill 'cause Mr. Sandman....I'm coming your way.




Friday, April 25, 2014

"Where's He Going?" Chapter II

Actually, there are any number of chapters of this particular book.  Tonight, Cesare knows darn well where his twin is going: the prom.




                                               Griffin proms: 2   Cesare proms: 0

This is Griffin's friend  Zaynia's Junior Prom.  Griff and Cesare are seniors and the dreaded Senior Ball has not crept up quite yet.  Tonight, Ces watches Griff walk out the door for his second time around at Junior Prom fun.  This isn't an intellectual process, Cesare understands that Griff was invited..that Griff has friends...that Griff will have a wonderful time.  And Ces cheers him on.  But none of us in this house can separate ourselves from Cesare's loss.  Cesare is slow, but not developmentally delayed.  He is disabled but sharp as a tack.  He falls into a social crack that his cavernous.  His typical friends from Kindergarten, first grade, want nothing to do with him.  His peers see him as slow and always in the company of his one to one nurse at school.   He has absolutely no friends.  Ces is in a "social skills group" run by the local college's speech and language department but most of the kids there have Aspergers and Ces doesn't seem to relate to them, or them to him.  Pariah is too strong a term, I suppose, but his peers keep their distance. 

As a parent, I don't want Griff to leave the house feeling guilty (though he does).  I want him to enjoy being a healthy typical kid.  His survival guilt is palpable.  He has been accepted to college in the fall and all I want is for him to step on to that campus and leave us behind.  I hope that he can do it.  

Tonight, I will try to get Cesare to dance with me in the family room.  I will try to make him giggle and make sure he has ice cream for dessert.  But, it will not be the evening he hopes for.  







Monday, April 21, 2014

Another Brian Regan video

Need another laugh?
Click HERE if you can't see the image.



Have you done this?


  • You administer your child's a.m. or p.m meds only to have your spouse walk in and say "I already gave him his meds".  
                         or, another version...
  • You're on your way to work, your child has left for school, and you frantically phone your spouse in his car and ask "did you give him his meds this morning?...No?  Me either."
  • Your child didn't finish his homework  the night before, and you know if you hadn't had the second glass of wine you could have sat down with him and done it and you email the teacher in the morning and play the epilepsy card?  "It was a rough night...I hope you understand."
  • You scold your child for whatever thing you've lost patience with on that particular day and he slides to the floor and has a seizure?
  • You make an excuse to skip your friend's child's bar mitzvah/ confirmation/sweet sixteen party/graduation extravaganza/school play/band performance/athletic award night/olympic trials etc... because you can't bear to be immersed in typical kids' success stories?
  • You have a third glass of wine/gin and tonic/beer instead?
  • You take the hairbrush away from your child, who doesn't give a rats ass about how he looks, and brush his hair over the surgery scars to try and hide them for him?
  • You try to fly the "Well, honey, if we can't beat epilepsy, maybe we can make friends with it."
  • You hover and linger and cajole and make a general nuisance of yourself? 



You've never done any of these things?  Me either.






Friday, April 18, 2014

Trigemination

It's a good news, bad news thing.  We saw Dr. DeGiorgio at UCLA on Tuesday.  Despite Cesare's seizures worsening over the last six months since our last check in he still found a 20% improvement over his pre-enrollment rate of seizures with the Trigeminal Stimulator.  Well, that's good news.  But he's still seizing virtually EVERY DAY.  Dr. D is a number cruncher and an extremely affable guy.  He's been on the front line testing most of the major, newer drugs.  He knows the research inside and out.  He was aghast that Ces was starting Fycompa.  "That's a baaaad drug", he said.  Bad news.  I've already initiated a withdrawal.

The Trigeminal Stimulator, or as we refer to it The Gemmy, has done nicely in UCLA's trials and is now available in Europe with a script, thanks to Dr. D.  In the US, new trials are starting at Cornell and NYU (our hospital) in the next six months.  If Ces wants to continue receiving Gemmy support, we can easily transfer to NYU.  No more rationalizing trips to California.  Bad news.  (Though, stay tuned for illicit trips to Colorado to smuggle Charlotte's Web out of Colorado Springs coming this summer).

Dr. D and I had a long, frankly circuitous, conversation weighing Cesare's need for autonomy and constant supervision.  We talked, as we have in the past, about SUDEP, a conversation I find maddening. How does one have a rational conversation about how to stare sudden death right in the eye? We talk about it like it is a side effect.  Dr. D has a simple risk assessment scale for SUDEP.  It ranges from 1 to 5.  Cesare is a three.  A three.  So, anything short of sitting up nights and staring down at Ces while he sleeps seems foolish, really.  "Research says that the risk of death decreases significantly when there is a parent in the room", he says.  But we both agree that I've got to get out of Ces' room, he needs privacy- normalcy.  Infrared night camera monitoring, wrist watch seizure alert system, baby monitor, wireless pulse oximeter.  I can string the kid up so that if he so much as rolls over I can leap out of bed and race to his room.  "I'll be psychotic from sleep loss within a matter of weeks", I reason.  "Hmmm" he says.

Why is no one talking about this?  We come back to the illusive T word again: Transition.  Ces isn't a child anymore.  How do we make the leap?  Close my eyes, plug my nose and jump.









Wednesday, April 16, 2014

What I want you to see

We're in California now, having completed our check in with our UCLA research study doc yesterday.  The sun is shining and we have a tiny pleasant apartment where the back gate opens to what Griffin described as a scene akin to the one in the Wizard of Oz  where everything blossoms into a world of color. Just beyond lies the romping doggy beach we love.
                                    
I could, and I swear I will, let it all go and be here in the moment.  But for now I'm stuck on the experience of being with Ces in the world.  We had to traverse JFK airport and accomodate a very tight fit on the airplane with Walden at our feet for six hours.  No one even knew Walden was there until he briefly occupied my seat when I crawled over the kind woman next to us to use the bathroom.  It was the moment I returned to my seat, and the many like it in the airport that are stuck in my head.  It's the assessment Ces attracts from others.  Sure, Walden is a dead giveaway. Service dog? What's wrong with that kid?  But even without Walden, Cesare gets the same stares or more politely, glances. They see Cesare with his mouth often open, and one slightly droopy eye but miss his beautiful face.  He slumps forward, the weight of four anti epileptic drugs heavy on his shoulders.  What else do others see when they look at him? What is it that makes them stare? What do they conclude? There is judgment in their eyes. Cesare doesn't see others size him up.  I can't not see it.  When I watch others watch him, I hear a door slam shut.  They've dismissed him.  I can't make others see Ces the way I see him.  And I shouldn't care.  But I do.  And so I watch the watchers and hope their eyes meet mine.  When they do I shoot them fire and I don't let go until they have to turn away from the heat.  

                                       





Saturday, April 12, 2014

Finding the funny

We've dissolved, over the years, into eating dinner in front of the TV.  Please don't tell the social scientists.  Everything I've read assures us that such a grave moral lapse in parenting will result in delinquent children. And don't think I don't remind my boys, every night (during the commercials) that they are destined for jail, or worse a career in politics.  Nevertheless, the kids choose (and we do too) to brave the consequences and settle down in front of the tube with the dogs curled at our feet. I have my standards, however.  We can only watch comedy.  Our criminally overpriced cable company replays The Daily Show and The Colbert Report every night at dinner time.  As my husband and I plate the food I call in to the kids to "find the funny".  They kindly go through the on-demand rigmarole and freeze Stewart in mid greeting until we're all gathered. Sometimes we change it up and watch Jimmy Fallon.

We need the funny.  I need the funny.  We need to laugh together.  My funny diet also includes "Wait, Wait, Don't Tell Me!" which can be captured in podcasts to play later. When the whole family needs a hit we play and replay Brian Regan- any of his one hour stand up videos will do.

(If you are reading this on an iPHONE or an iPAD, CLICK THIS and THIS to see Brian Regan)







Regan, for me, is generally a two handkerchief comedian.  When we head to San Diego after our UCLA doc appointments, as we will next week, we take in as many consecutive nights as possible of the National Comedy Theater downtown.  It is sterling.  It is exclusively clean comedy (as is Regan, by the way).  So clean, in fact, that they have a paper bag rule: if a performer or audience member says anything off color they must wear a paper bag on their head. Both Cesare and Griffin have alternately been brave enough to climb on stage when invited to participate in a silly skit.  No bag, by the way.  They aren't delinquent yet.

(iPad and iPhone readers, click this to see the National Comedy Theater in action)


What do you do to find the funny?




Tuesday, April 8, 2014

The confluence of two really good tries.

On Monday we fly to LA to see Dr. DeGiorgio for our twice yearly check in.  Dr. Italian introduced the Trigeminal Stimulator a few years ago.  I heard about it on NPR when we were already in California for the aforementioned stab-in-the-dark treatment with the Osteopath.  Cesare has been in the UCLA study now for almost two years.  In the first six months we saw a decrease in seizures of about 30%.  That was success!  After the first year, I couldn't tell anymore if it was helping.  Ces has been so unstable...who knows.  But, his enrollment in the study and the need to fly him out to California twice a year gives us  a sort of moral, ethical excuse to vacation in California.  We routinely spend one hour at UCLA and then a week in San Diego.  We must... you understand.  There must be some perks to being an epilepsy family.

What makes these trips tremendously more fun for us is taking Walden, Cesare's service dog.  He's the sweet, sweet heart given to us by Canine Assistants in Atlanta.  Ces waited three and a half years for this guy.  Trained as a seizure response dog, Walden never gets a chance to show us his stuff because he doesn't recognize Ces' seizures.  Walden audibly snores through them.  He is my son's gentle best friend nevertheless.  And the only thing more joyful than being woken in the mornng by a happy Golden's tail slapping  against the comforter is being woken by two happy Golden's slapping their tails against the bed.  Ella joined the band 18 months ago. 





Walden and Ces



Please don't ask me how (if I told you I'd have to kill you) but we fly both dogs out with us to California when we go.  San Diego loves their dogs and have whole beaches dedicated to them.  Happy for us.  

Dr. DeGiorgio may not let Ces stay in the trial once he gets a load of the seizure numbers over these last six months...they are all over the place.  And Walden may never run for the phone after one of Cesare's seizures but the confluence of the two move me to offer a rare nod to epilepsy for this one purely joyful event twice a year.  


Saturday, April 5, 2014

No Fear

Cesare has an art project assigned to him in school.  He is to begin by drawing a picture of something he is afraid of.  "But I'm not afraid of anything."  We've had this conversation many times before.

Ces was diagnosed with Temporal Lobe Epilepsy (TLE) when he was six.  But that's not when the epilepsy began.  It began when he was 4, two weeks after the horror of 9/11.  We don't live within toxic cloud reach of NYC but close enough that the trauma of that day crept right up the Hudson River to our community.  One day, standing in the middle of his Kindergarten classroom, Cesare screamed- hid as if being chased.   He didn't stop screaming for 18 months.   Protective as we thought we had been, we assumed that some of the images, the descriptions of the attack had seeped into his world.  Perhaps he was traumatized, suffering from anxiety.  Who among us wasn't back then, in our own ways?  

Cesare would wake up screaming in the middle of the night.  So pervasive was his private terror that we all ended up in one room together.  1:00 am, 3:00 am, he'd startle awake shaking and screaming.  Not a night terror, he could communicate just fine.  But the things he said were frightening to me.  He was hallucinating gorillas, monsters.   I thought I was losing my son to mental illness.  

I had never heard of Temporal Lobe Epilepsy nor, unfortunately, had the psychologist I engaged to help him.  A good friend and a renowned psychologist, Dave was spending most of his days volunteering in neighborhoods near ground zero treating kids who had been transformed by what they saw. When he first met Ces, Dave believed that he was affected too.  Worsening throughout therapy, Cesare was about to begin a course of anti anxiety meds when one night (as we four slept side by side in the boys' room) I witnessed Cesare's body tense up in his sleep.  Within days we had the correct diagnosis.  Dave, really an excellent psychologist, apologized to Cesare years later and pledged never again to treat a child with chronic fear without ordering an EEG.

After a dozen years of seizing each of Cesare's events still begin with fear- that's his aura.  Ces knows it as "artificial" fear.  Epilepsy-manufactured-and-patented-fear.  He knows no other fear. I've never seen him fearful: never startled or recoil from an image or a movie scene... nothing at all. And he doesn't fear epilepsy.  Crazy as that is.  He's accepted it. 

His teacher prods, "Something Ces, draw something you fear".  He can't.  It's the epilepsy, stupid.   






Footnote

It may matter to no one, and likely you did not notice, but I feel I should make some statement about the way my children's names keep changing as I write here.  They haven't in fact.  But I couldn't find my way between privacy and transparency.  Both of my boys have weighed it out and decided that they'd very much like to keep their names, thank you.  They seem to trust that I will write what I need to write.  So, thank you Griffin and Cesare for your love, trust and maturity.



Or as I like to think of you...




Wednesday, April 2, 2014

Buddhas come in all shapes and sizes. This one can fly.

                                                                 Slomo (click)


                      I've never met a neurologist quite like Slomo.  But he's my new hero.





You want to feel happy?

Sixteen seizures last night.  I'm ready...

                 CLICK