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.  

The Changeling

Cesare has been surprising us lately.  That seems like a terrible thing to say and wreaks of low expectations.  Hmmm.  Yesterday, Cesare and I headed to NYU for an MRI: the first step in considering the possibility of an RNS implant.  Getting to the city and navigating around traffic, both in the car and on foot, is an ordeal for a young man who tends to be distracted by falling leaves.  We made it, and he lay motionless in the DEAFENING claustrophobia machine for more than thirty minutes.  That's not the surprise.  Holding the door of the office open for me, apologizing when he bumped into me and saying thank you when we hit the deli afterwards were the surprises.  And so that I don't sound too awfully dumbfounded by my son's forays into civility, he actually said, "Did you hear that?".  I listened..... "What?"  "I said thank you, and I said excuse me earlier".  To which I anxiously replied, "What have you done with my son?"

But the biggest surprise, bar none, was Cesare's experience on the senior class trip.  His brother did not want to go, and so Ces was to head to the New Jersey waterpark with 100 other seniors accompanied by his best buddy/one to one nurse Michele.  They would have had a lot of fun together.  At the last minute Michele had a family emergency and it looked as if Cesare would not be able to go as the school district has no substitute nurses.  Enter dad, who willingly took the day off to keep his eye on Ces.  Tom stayed in the background, brave/foolish....could have gone either way.  (Note: I specially ordered neon green bathing trunks that could be spotted, by...well... a helicopter, and though he wore them, Cesare reported that every life guard in the park was wearing the same color. Score?  Cautious Mom: Zero)

Tom sent me short videos throughout the day that, had I been there, would have had the back of my head in every shot.  But all the pics I saw were from a distance.  And at that distance, Cesare sought out other boys on the trip.  He somehow ended up with some of the most popular, and nicest, guys in the senior class.  And though they have been in school together since kindergarten, none of them have spoken to him since he became the "kid with seizures" at age 7.  To see them together was surprising.  To see that they hung out together the whole day was heartwarming.

Ces is fun to be with.  And while I know that, I'm glad that others got to know that, too.

His new/old friends camped for this shot of them "naked", Ces played the straight man.

Cesare will continue to exceed my expectations of him, I have no question.  Though I could raise the bar in my mind, expect more...I prefer to be surprised.