Postictal

The postictal phase of a seizure is the period of recovery after the electrical event has ended.  I've never had a seizure, but I feel like I'm in the postictal phase of one now.

Cesare's case went before the surgical board at NYU.  They considered his candidacy for the RNS implant.  They said no.  The build up, let's call it an aura, lasted about five months and included a smorgasbord of tests: VEEG, MEG, neurophychological, MRI.  The event itself was simply a brief email.  For a moment, I lost my breath and couldn't hear anything around me.

The after effects of a seizure can include "both psychiatric and cognitive symptoms".  I have both.  I feel angry and I think I could wail on someone.  This isn't a rational anger.  The surgical team did not "set up" my son, nor did they come by this decision casually.  But postictal behavior isn't rational.  Or is it?

I just want treatment: every last established or experimental treatment that exists.  Anywhere.  That's all any of us want.  The inequity of the CBD oil phenomenon, for example, is cruel.  Those of us outside the small windows of places like Colorado Springs are like empty pocketed children who may only put our noses to the glass and wish we were allowed in to the sweet shoppe.  Today I read three articles about parents whose unimaginable loss could conceivably have been prevented with access to CBD oil for their children with epilepsy.

I understand controlled studies.  I understand risk analysis.  But I'm a parent and you probably are too.  That supercedes patience and tolerence for regulated health care.  Shirley...

Perhaps a different but no less exacting role is the epilepsy doc or surgeon who has to say "no".  Hundreds of patients and managed medicine that demands docs squeeze caring into just minutes for each appointment.  An inbox that's never empty.  Failed treatments.  Patients who succomb.  Two of Cesare's docs over the years left their jobs because it was just too much: one I still miss, the other had no heart.  But those that see it through are quite simply remarkable.  The doc who perfomed numerous surgeries on Cesare, and is responsible for eliminating Ces' most severe seizures, still rides his white horse into the operating room at NYU after 25 years in practice..even though he declined to mount-up this time.

I'm sure with time I'll shake off the impulse to smash something or to picket the hospital and I'll allow rational thought to reign.

What comes after the postictal phase?  Life.

Separation Anxiety

As I am writing this post I need to stop every few minutes to comfort Ces who is lying next to me.  He's in day three of completely unexplained batches of seizures: as many as ten back to back more than once in a day.  I've already administered  Ativan to calm his system...but he keeps rolling- 30 to 40 seconds each time.  He freezes, gasps, trembles, sighs, and then says, "over".  Last weekend he seized sitting in the bathroom and tumbled into the vanity lacerating his scalp pretty colorfully.  He is scheduled to have the staples removed this afternoon.

And each one of these suckers, as they always have, start with a fear aura.  What must that be like?  Undefined terror grips Cesare that can't be explained, and can't be quelled with any of the conventions the rest of us use to confront our fears: a light in the dark, or safety in numbers.

Cesare has already topped out each of his anti-epileptic drugs.  There is nothing left to increase, and virtually nothing on the market he hasn't tried.  His safety intervention med is a nasal spray, called Medazolam, which has thus far proved worthless.  So I pile on the Ativan which makes him sleepy and dopey.  (He's just had his eleventh seizure and I've just handed him his second Ativan).

The last time this strange cycle occurred was early November.  After increasing his Fycompa, his old pattern returned: averaging two or three seizures daily, usually around bedtime.  (My apologies, Fycompa, to anything I have said in the past about your potential side effects that may have offended you).

With the confidence that that strange anomaly had passed and with the advent of the new year we spent some of our Winter Holiday moving me out of Cesare's bedroom.  New paint, some new furniture and the plan to order a nifty kind of new pulse-ox that is worn like a wrist watch.

This has been a difficult move for me... a whole different kind of letting go from the tearful goodbye I had just said to Griffin in the fall as he headed for college.  And wouldn't you know, Griffin leaves this afternoon to return to college after a month home.  Two very different kinds of separation.  Two very different kinds of anxiety.  I am preoccupied with both.

Last week, Griffin engineered making good on a challenge he had with his brother: when they turned 18 they would get tattoos.  They agreed on the Celtic symbol for Brother.  They are both quite proud of themselves, and I am quite teary.

Cesare is gearing up for his own loss as his twin packs up to leave today.  We've talked about coping and what forms that can take.  Cesare says he needs to wipe Griffin from his memory to make the transition.   He told me yesterday that he wouldn't be wearing T-shirts for a while.  He wants long sleeves to cover up the symbol that represents what he will soon be without.

Cesare has stopped seizing now, and we'll go on with our day.  Tonight, I'll be in my bed with my ear close to the baby monitor and wishing I had a life line to Griff as well.  Cesare will close a door in his mind that keeps his longing for his brother just a little further than arm's distance away.

Thanksgiving, again

Not five days after my last post about my dad, he had a stroke.  I bulleted down to Florida and was in the Neurology ICU before that day's end.  Shortly after the stroke, before I boarded my flight,  my sister put the phone to my dad's ear.  He told me he loved me and cried.

Luck, or divine Intervention or both has my dad back to normal and at home in his bed, and I in mine, tonight just three days after he said goodbye to me.  My sister, a nurse, just happened to be standing near my dad when she saw that he was acting oddly...she called 911 within the first minute...the ambulance arrived and transported him to the hospital within the next 15 minutes.  The stroke intervention, TPA, must be administered within 35 minutes of the event.  He got it within that window.  TPA only works on 50% of clots and it worked on his.  

My dad is extraordinarily lucky and we are immeasurably grateful.  We love you Popi.

                                     

Thanks to Popi

My Dad flew up from Florida to join us for Thanksgiving.  I am grateful that my dad was here with us.  He is unflappably positive and the role model for all of us about how to love.  My husband is fond of saying that when he grows up he wants to be just like Popi.

Popi and Cesare have a special bond.  Popi and Cesare are exceedingly silly, for one.  This is one of my favorite shots that capture my dad the muse/photographer and Cesare the protégé.:

Ces and Popi had some nice moments together last week.  I worry that each will be our last.  

Growing Pains

Such slippery territory is this young adult phase in my son's life.   Newly 18 and a six month post graduate from high school,  my son needs to learn to shape his own life.  Thus far the shape he has chosen is sitting cross legged in front of the XBOX.  Cesare does work three afternoons a week interning in a local manufacturing plant.  I am proud of him for sticking with this, even on days he doesn't especially want to go.   His paychecks acrue in the checking account I helped him open a few weeks ago.  He doesn't spend his savings: he wants for nothing...except to play his video games.

And so I, as I find many parents do, ask myself how much is too much?  If left to his own choices Cesare will play 10 hours of video games without so much as a pause.  I think any reasonable person would agree that this is excessive.  Why?  Because, as experts in the UK, Australia, the US and many other countries will enthusiastically tell us excessive gaming is bad for children.  It interferes with their social lives, and their school work.  It can lead to health problems..obesity and, in surprisingly not rare cases, blood clots resulting in death!

But for my son, as for so many of the young men I work with at my Alternative High School, this is their opiate.  And this is their platform for social connections.  This is the arena in which they excel.  This is the one arena that is manageable and utterly under their control.  I've read articles written by mothers of sons with Aspergers who feel that the XBOX (and XBOX Live) has given their child social connections that are free of judgement and in which their sons can feel competent.

The amount of time that my son spends playing games on his XBOX is worrying me.  It isn't the shear uninterrupted hours that is the most concerning, it is that there seems to be so little else in his life that draws his interest. It doesn't take the therapist in me to suspect depression, any parent can see when their child is withdrawing from life.  My concerns about how Cesare spends his time is rolled up in equally wavy territory concerning his newly emerging status as an adult.  Just weeks into this eighteen year old variety of adulthood, I have curbed, considerably, the number of edicts I hand out.  I make "suggestions" and I express "concerns".  Just a mere six months ago my 17 year old twins lived by rules that included small doses of XBOX in order to make room for homework, chores and life.  That's not so easy now.  And it shouldn't be.  Disability or not, Cesare must begin to make decisions for himself.  

And so I've been tip toeing around him a bit this week looking for an opportunity to bring him into a meaningful conversation about how he spends his time and his life in general. No small undertaking.  

I decided that this conversation could wait no more.  He had a good day at his part time job, he was freshly showered (under duress) and seemed amenable to an interruption in his game play.  

My brilliant and sensitive son patiently explained to me that he feels the need to find ways to deal  with his life.  "It's my coping mechanism, Mom."  Coping with epilepsy, I asked?  "No" he says emphatically, "I don't have to cope with something that has always been there and will always be there.  I've never known anything else."  It is his brother's absence that causes him such grief, he said.  Griffin had just returned to college the day before and won't be home for another three weeks for the Winter Break.   "It's like watching a conveyor belt going by in front of me.  And it's always empty.  But then suddenly someone puts a big pile of candy on the belt, that I'm not allowed to touch." (Referring to his anticipated return of Griff)  It just keeps sliding by in front of me, and since I can't touch it I have to distract myself...I can't think about it."  Ces is teary now, talking about his candy-brother.

Cesare rarely talks about his feelings and I foolishly had no idea he missed his twin so much.  But, of course I should have.  But I read more into what he's telling me.  I read that he is also mourning the emptiness of his "conveyor belt".  How vividly dark that seems to me.  The imagery also reminds me of life literally passing him by.

I've written in the past about offering whatever opportunities for fun and social engagement I can think of in this semi-rural town in which we live.  Cesare has declined each offer.

I don't think this state of mind, or state of life,  is endemic to only those with epilepsy.  I know that many young people don't see the world before them as laid on a silver platter.  I think too many see a conveyor belt squeaking by them as empty as Cesare's.  What these images have in common, though, is a world view where life and all of its opportunities come to you.  Perhaps these views also have a parent behind the curtain who is guilty of cranking the conveyor belt out before their differently-abled child filled with arranged playdates, arts and crafts offerings, hot and cold running meals, and activities for sunny Sundays.

My wish for Ces is to see opportunities as waiting for him to come and get them.  He'll have to venture out into territory that isn't comfortable or familiar to him.  I think it's called growing up.  [We] parents have a shift coming too.  To support but not enable.  To point them in the right direction, but then get out of the way.  Wow.  Is that easier said than done.  

Flashes From the Past

I'm writing from day five at NYU where Cesare is undergoing his kazillionth Video EEG.  He's graduated to the adult floor, having turned 18 last week.  The folks are friendly and knowledgable.  Staff from the pediatric world a few floors below have popped in to say hello.  For us, these folks are more like family than I care to accept.  We've spent whole months at a time here in years past.  But Cesare has been so predictably stable since his last surgery in 2008 that we've had no need to step back into the world of sleepless nights, and the frightening sound of an entire team of running feet racing to a fellow patient's room where seizures may be more life threatening than Cesare's have ever been.  There but for the grace of God.....

                                   

Cesare seems to have lost his stability.  That's why we're here.  That and this is the next step toward consideration of the RNS implant. We've not captured the newer, more intense seizures during this visit.  What the docs have captured has not convinced them he is a shoe-in for the surgery.  He's not out...but he's not in.  Ces and I discussed all the possible permutations of more data collection in this pursuit.  It would likely include opening him up again to get more clinically accurate EEG data.  I told Cesare I didn't think that was a risk worth taking, again.  But now he's 18.  It is his decision.  But, I'm getting ahead of myself.  We have another test to do before the surgical review team will even consider him.  

Tom and I have found ways to make these long stays bearable.  Most of those "ways" involve food.  Italian deli; Thai delivery (to the foot of the bed!), and now a Fairway market at the end of the next block.  If you are unfamiliar with Fairway and the like, it is an orgy of smells and tastes including both an olive and an olive oil bar, a cheese department and a bakery that will lay you out flat.  

To work off some of the idle, culinary, weight gaining hours yesterday I took the stairs down from this, the twelfth, floor.  Yes, I understand that taking stairs DOWN twelve flights is not as advantageous as taking them up, but we won't quibble.  Walking down I was reminded of the photos I saw during Hurricane Sandy two years ago.  Most patients were evacuated before the storm hit, but very critical patients remained.  When the first floor flooded and the generators blew, the remaining few hundred were carried, or "sledded", down these stairs to waiting ambulances who carried them off to neighboring hospitals.  

I think all nurses are heroes and saints but the crew here is outstanding.  And on that night marched up and down countless flights of stairs in the dark just doing what they do.  

NYU is rebuilding.  Signs of improvement are everywhere including new elevators that now get you to the highest floors on the SAME DAY.  And plans are in the works for a new pediatric hospital, though they've been talking about that since we first started coming here ten years ago.  But, the East River, just steps away,  isn't going anywhere anytime soon.  What are they thinking?  

I noticed something while Cesare and I have been roomies here this week.  I'm far more patient with him.  I don't bark and I definately don't bite.  I was thinking about what makes the difference.  When I'm home I am driven to "get things done".  I am laser focused on completing tasks and crossing them off my list.  From this distance I can see how meaningless that is.  But at home, it seems that's the best I can do.  Cesare can't understand that kind of shortsightedness.  Because his is shorter: just what's here and just right now.  There is no list of things to tick off.  There is no need for him to feel he has accomplished anything.  

I head home today.  Tom takes my place and likely will bring Cesare home tomorrow once his regular med regime is restored and he's back to regular functioning, whatever that is.  

I'm sure I'm not alone in this, but it is the not knowing that sets me on edge.  I worry that the predictable seizure life we've lived is being tossed into a blender.  I worry that a new implant won't be an option after all.  I worry that Cesare's life will be short and unhappy.  Me and every other aging parent on this floor.  We pass each other in the halls.  Tense, tired and silent.  

We'll share this one.

In no way was I prepared to celebrate my twins' 18th birthday today.  It is so large, so inconceivable. While 18 means so much in our culture, it signifies so much more for us.  The first thought that occurs to me, is "We made it!".  I survived parenting twins, and we all survived pediatric epilepsy.  I could ruminate on all that that means, but I choose to just be thankful today.  Gratitude is itself a gift.  If we can hold on to some semblance of appreciation for...anything- then life, no matter how intense, is lighter and sweeter.

And so as I rejoice in my guys and their big day, I am also celebrating my givingbirthday.  I may celebrate quietly and to myself, but today is my big day.  The most significant day of my life, 18 years ago.  

Griffin came home from college and found us all thrilled to be in his company.  It has been a difficult, scary week.  Cesare's seizures have, after several years of being pesky but predictable, taken off on a whole new path.  His seizures are clustering and won't stop easily.  He's taken a couple of good falls, too.  We went to see his doc at NYU and have decided to accelerate the process to explore his candidacy for the new RNS surgery.  It's time.  

But we won't speak of that this weekend.  It is our big day, the biggest of days.

I Was Waiting for You

Nick Urata