What Lies Beneath

The school year has begun for Cesare.  Medicaid, bless their souls, continues to fund one to one nursing for Cesare.  I advertised on Craigslist and very quickly found not one but two wonderful nurses.  I explained to both that their role would be to medically supervise Ces at home and when accompanying him to college to help him organize himself and stay focused.  Cesare has enrolled in just one class: Biology.  He is finishing his first week of school today.  Megan accompanies him to school and reports that in class he is engaged, with his hand in the air.  It takes a  team of two conducting a small summit each morning, however, to help him to organize his belongings before heading out the door.


It stops me in my tracks, at times, to consider the possibility that underneath the pervasive effects of Cesare's many drugs, could conceivably be an alert and highly functioning individual waiting patiently to get out.
If you are not yet acquainted, allow me to introduce you to Cesare's battalion of drugs:

• Onfi (clobazam): "Onfi causes drowsiness and sedation. Onfi may slow thinking and impair motor skills."

• Felbatol (felbamate): "Felbamate should be used with extreme caution, because it carries a significant risk of liver and bone marrow failure, which can be fatal."

• Fycompa (perampanel): "Side effects include dizziness, sleepiness, fatigue, irritability, nausea, weight gain, and problems maintaining balance. Serious psychiatric and behavioral reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported. Patients should be monitored for such reactions, as well as changes in mood, behaviors."

If you are the parent of a child with epilepsy, or any other drug responsive disorder or disease you will understand when I say these horrible drugs are our friends.  They have, after multiple brain surgeries and alternative therapies, given him a semblance of a life.  How he functions at all under the weight of those side effects is mind boggling.  

As the fall marches on, we will delve deeper into the possibility of the RNS implant.  If he is a candidate he wants to proceed.  We've stepped many times before into the land of 'could this be the one?'.  I'm not ready to go there quite yet.  But the specter of full time college, a career, independence...wow.  That young man is in there, I just know it.  However, we'll happily take him any way we can get him.  

The Dive

It has been almost 48 hours since my son Griffin walked out the front door of our home and through the door of his new home, albeit a small one...about 12' x 12' for two college freshman.  I fully anticipated the grief I am feeling.  That doesn't make it easier.  I object to the dismissive notion of an "empty nest" which reduces me to a caretaker who has lost my job.  Instead, I am grieving for the young man I have come to know in these last few years.  I am grieving his friendship and the way he fills a room.  I am grieving the way he balances a home that is too often filled with illness and urgency or too much quiet.

(Griff, Cesare)

I've been thinking back to when my twins were about five years old and they learned to swim at our town pool.  We spent most of our summer days there, until it became clear that Cesare's occasional attacks of fear and anxiety were not that at all: he was developing epilepsy. The freedom to swim about and search for colorful toys on the bottom of the pool were no longer  options for him.   Summers filled me with dread knowing that Cesare would demand the same freedom his brother had and that I would have to curb that freedom.  I met with the pool staff, outfitted Ces in neon swim trunks and had him wear a distinctive rainbow bracelet so that all of the young lifeguards could spot him and help me keep an eye on him.  But his freedom was, and forever would be, curbed.

Griffin and Cesare loved the diving board.  I did too.  I'm not a great swimmer, but I can swan dive!  What a feeling that is...arms stretched out to embrace the sky, back arched and head held high before setting for the plunge: arms come together, head down and laser focus on the entry.  I've spent all of Griffin's life trying to prepare him for the dive.  Embrace the world, hold your head high...reach.   I don't know that I've been the best coach.  I've been distracted and infinitely fallible.

Perhaps it was foolish, but I could not deny Cesare the same opportunity to learn to dive...or simply to run freely to the end of the board and jump into the cold, blue void.  I would cajole the lifeguards into allowing me to tread in the dive area to await his plunge.  I'd hold my breath and zero in on Cesare's face, looking for any sign of a seizure creeping up.  He would shriek with delight and hit the water still smiling.  I'm still in the deep end with Cesare.  Watching, waiting, protecting.  I hope for the day that his entry into the world doesn't have me treading a few feet away.  

48 hours ago, Griffin's toes left the board and he's in the arc.  It's too late for coaching now.  I need to give him room, keep breathing and witness the entry.  He's allowed a flop, I've had so many.  He need only get in line again and try to perfect his approach.  It is his challenge now.  

Stabs in the Dark

For as long as we have been a family, we have either worked in or gone to school.  Summer is our  time to regroup, travel and laze around before the fall comes.  The fall is our January 1, the start of the new year.  It is a comfortable routine: new spiral notebooks,  new teachers for the kids and new students and sometimes new administrators for Tom and I.  My friend describes the back to school procession and the ensuing hubbub as being shot out of a cannon and landing at the end of June.  And that is how it has been for us.  Vetting the school scene for Cesare: assertively but not too assertively spelling out Cesare's IEP for his new teachers and therapists, reminding bus drivers he seizes if the bus is too hot on those waning days of summer and making sure that the school nurse has every conceivable form signed and delivered.    For Griffin, I have been the gnat in his ear reminding him to plan ahead..record homework somewhere and moderate his game time at home to squeeze in a little studying time.  It is like being violently launched into space, but not the unknown.

This fall, however,  is all uncharted territory.  Now high school graduates, my boys are stepping out.  Griffin leaves for college in eleven days and counting.  Is he ready? Is any freshman ready?  I cannot be his organizer and time keeper anymore.  He'll land on his feet, but I won't be there to see it.

Cesare lives utterly in the now, lucky fellow.  He is not a planner like his mom.  But transition to the next phase of his life requires some planning. Pulling teeth, I tell you.  I thought we had a plan for Ces to take a couple of courses at the Community College and work in the grant-funded-job coach-assisted factory job he was ushered into this summer for a couple of days a week.  Cesare seemed to be ok with that.  I suggested he consider a two year course to become certified as a  Veterinary Technician.  That sounded just fine a couple of months ago, but as we're getting closer Ces has been asking, "why college?".   Why indeed.  Why anything?  I feel as though I'm swimming in a soup..a chowder really...dodging chunky obstacles in my way.  After all of the sometimes questionable guidance we received during Cesare's entire compulsory education, suddenly it is very, very quiet.  No CSE meetings.  No clear direction or assistance.

I tell Cesare that factory work, while diverting and producing a small paycheck seems kind of cool it will feel decidedly uncool and quite boring after a number of months.  I tell him that school provides not just stimulation for his brain, but provides a chance at social connections and recreation.  He looks at me blankly.  He's very happy sitting home and playing his XBOX, thank you.  But, I tell him,  there is more to life.  These existential conversations have come up before, and have largely fell flat I believe.  I am hoping that there will come a day that through the fog of meds and the emotional burden of "having a disability" to say nothing of the stress of knowing your disorder can creep up and utterly debilitate you without warning, Cesare will consider the future.  I hope that he will have the capacity to ask the bigger questions about his life:  what does he want? and, what does he want to leave behind?  Until then, I fill the uncomfortable role of trying to give him some direction and motivation.  I wish I knew in what direction to point him.

Cannabis U

Since Cesare was diagnosed with epilepsy at age 6 we have been disinclined to penny pinch or even save for a rainy day.  Thank God we have excellent medical coverage, and so instead of saving we try to travel as a family.  Truth be told, it is the rare occasion when my boys will take their various screens away from their eyes and really look at what is around them.  And, coincidentally that often is the rest of the family!

Since Griffin is leaving for college in the fall I asked him to pick the summer vacation this year...what would he like to see?  He said he'd never seen the Rockies.  And that's how we ended up in Colorado this week.  I don't know if part of Griff's curiosity had to do with the legalization of marijuana here, or if it was just about the incredible scenery: (my cup of tea this morning)

                                       

But I was all for it because I have so much I want to learn about cannabis and how its various products might help Cesare.  New York has just legalized medical marijuana.  I contacted his doc at NYU and asked to get rolling on that.  She responded by email, very briefly, that they were not up and running yet.  I don't even know what that means exactly.  So I am happy to be in a state with lots more experience in this area.  I love Orrin Devinsky at NYU and I can't pick up a journal or meander about the web without reading a cautionary article from him about the relative unknowns of using cannabis to treat epilepsy.  When hoards of families moved out here to Colorado Springs to access Charlotte's Web for their epileptic children, Dr. Devinsky was featured prominently on the front page of the NY Times imploring families to slow down.

Nevertheless there is much to learn about what is out there for Cesare, and unfortunately, not much guidance.  Given that I made all of these arrangements months ago, one would think I'd have done my homework before flying out here.  But I did not, not enough anyway.  Frankly I don't know where to turn.  I rented this house, near Colorado Springs, hoping to somehow bump up against the epilepsy community here.  (And if anyone from that community is reading this, I hope you'll say hello!). I joined a Facebook group for parents wanting to learn more about CBD oil for their children.  The folks there have been very supportive about exploring what could be helpful.

What I understand is that three elements extracted from cannabis have healing properties:  CBD (cannabidiol), CBN and THC which is the psychoactive substance in cannabis.   Mary's Medicinals provides a lot of info about their products and what extracts might aid what ailments.  I've learned that varying combinations of these elements can address different kinds of seizures.  Mary's Medicinals makes transdermal patches and gels that have different ratios of CBD to THC.   Without a doctor's script in Colorado a visitor like me is relegated to buying only products that are deemed "recreational".  Inexplicably, Mary's Medicinals can be found on both sides of some of Colorado's dispensaries: the medicinal and recreational.  And so I learned that I can purchase all of these extracts and potentially use them in combinations and very low doses to see what effect, if any there might be.

Doing so without a doctor's oversight makes me nervous.  Finding that they help and then not being able to access the products once we return to NY makes me crazy.  Dr. Devinsky recently wrote that families seeking treatment for their children with epilepsy should not be discriminated against based on their zip code.  Right on.  The legalities of providing my minor son with these extracts, and the prospect of getting them home with us is mind boggling.  I have read that CBD extract is largely from hemp and no more illegal than buying any hemp product.

We're not just spittin in the wind here.  Cesare has tried diets, IVIG, a dozen meds, the Transgeminal Stimulator and seven cranial and brain surgeries and still seizes almost daily.  If he's not a contender for a remedy, no matter how controversial, that could bring him some relief I don't know who is.

We have a lot to think about before we leave the land of hope.  Wish us well.


 

Daytripper

This is Cesare's third year at Camp Great Rock.  Ces was never able to go to a sleep-away camp when he was young.  He went to one, or two day camps.  One was a terribly overpriced computer camp.  I gamely sat in a common area with a book each day while he was learning programming and what not.  I think he made it 'till midweek when the computer room door swung open and a frantic counselor burst through carrying Cesare, lifeless, in his arms saying Ces had collapsed at the computer.  I think we made it one more day...Ces was nervous, the counselors were frantically nervous and his co-campers gave him a wide berth.  This was all presurgery and comparative improvement for Ces.  Good times, good times.

Camp Great Rock, while associated with the Children's National Medical Center in DC, is located in West Virginia at the edge of the Shenandoahs.  It's a very long drive for us from New York.  I stay the week not because I want to save myself two round trip drives (although..who wouldn't?) but because Cesare is not able to stay overnight with the other campers.  The first year, I think it was more my preference because it was not uncommon for Ces to have ten seizures a night and I frankly didn't trust that anyone would maintain the same level of vigilance that I do at night.  Seizing much less last year, the folks that run the camp said they would prefer he not stay due to his regular seizure activity.  This year, I was ready to let him stay...at least a couple of nights.  But I was told he could not.

I should preface this by saying that I have complete faith in these amazing professionals who dedicate themselves to medically affected kids all summer, every summer and they have been doing so for decades.  Epilepsy week is only one of several groups Brainy Camps welcome each year.  The three individuals who are the touch stones of the camp practice in the field of epilespy and have been advocates for the millions afflicted.  I trust their judgement.

When I asked why he could not stay overnight this year the director explained that while yes, all children at the camp have epilepsy, Cesare's seizures are too predictable- too regular.  I didn't really comprehend that, but didn't fight it: I know that the young (albeit dedicated) counselors in the cabins are not likely to wake from sleep at Cesare's quite grunts and gasps during a cluster of complex partial seizures. And, upon our arrival yesterday, the director said she'd like to see Ces try to stay one night this year...if the seizures aren't too frequent.

I haven't really focused on the irony: Cesare loves to come to this camp and that's that.  To take the sting out of being marooned in the middle of no cell or wifi land I treated us to a very nice hotel in the nearest city, Winchester.  It is a 30 minute commute to camp each morning and evening for me, but well worth it.

                                       

A side note here.......I had always believed that when I am old(er) and cranky(er) that I would like nothing more than to occupy a small cabin overlooking the water on Vancouver Island.  After a lifetime of working with people and caring for my wonderful children, I would quite simply retire from it all- impossilbly.  Not unlike this nice spot...

                       

After three yearly forays into being one with myself in West Virginia, I have come to my senses.  I simply do not occupy myself well.  I think I am always in motion for a reason.  Hmmm.

Last night I headed out to pick up Ces from the camp location.  The route takes me down many winding roads and I pass by way too many deer carcasses.  My phone jiggled with a text message, it was from Cesare saying he was in the middle of a cluster.  That I recieved a text at all in the twilight zone is incomprehensible, but that Ces was telling ME instead of a counselor...or someone at camp was unnerving.  I barked at SIRI to tell Cesare to tell someone and try to get an Ativan.  He didn't respond.  To say I drove at the speed of light would be silly, but damn close.  One of my shitty summer jobs was to transport cars for Hertz with a lot of other stupid, often reckless, 18 year olds.  I can handle speed, unfortunately.  I cannot handle deer however.  But they clearly sensed a frantic mother in the wind and stayed clear.  A bunny sacrified her life however, I hope the wild kingdom will forgive me.  

When I arrived I passed the directors in their car huslting down to Cesare's cabin and I followed: the two of us kicking up dust like an episode of MacGyver.  I saw one of Ces' counselors, also in his car looking to retrieve assistance.  I nonchalantly/hysterically knocked on the cabin door and when it swung open I saw Ces standing among his friends yukking it up about something or other.  The cluster was over, he was almost fine (he seized many, many more times back at the hotel).  The two women who are the mainstay of the camp were calm and very responsive.  We made a plan to address a day time cluster should it happen again- which is very, very rare.  We talked briefly about what might have set off the seizures.  I made a list: the 100 degree heat and playing all day out in the sun, red dye, nitrates or antibotic hopped up red meat or other additives hidden in the camp food in a way Cesare could not discern, or perhaps stress.  This registered what I took to be quizzical looks on the women's faces. The conversation was revealing to me.  Don't other kids react this way?  Is Cesare an aberration even here among his real, actual peers?   He is, apparently.  Ces told me that he was chatting with a similarly aged young man at camp who has had only one seizure in his life.  Cesare was incredulous.  He tells me when someone has a seizure at camp..and it is not often.  I only hear about a couple, among all of those kids, each season.  

Whether there are very few kids out there very much like Cesare...still seizing if not daily then every other day...or whether those kids simply don't make it to camp I don't know.  But here in the land of greenery,  archery and camp fires, Cesare still has not found his place: not so different but different enough.   He's the kid with seizures who cannot sleep at epilepsy camp.   

The Anticlimactic Climax

I brought tissues and everything, but I didn't use them.  It was a beautiful day and we celebrated with family and friends.  I was very, very proud but I didn't have that heartbreaking rush I was expecting.  It will hit me, I think, soon enough.  Cesare "marched' with his service dog, Walden, who was oblivious to his dapper mortar board falling off his head.  Cesare's high school has so embraced Walden that when Cesare was handed his diploma, Walden was given a fine bone.

Cesare's quite fabulous brother followed steps behind...

I am a very proud mom. 

Take that, ADHD, depression and epilepsy.  

Prom Update

Proms:

Griffin- 3

                                  Cesare- 0 And, he doesn't care.