Wednesday, December 9, 2015

Gone Awry

Yesterday I was actually looking forward to Michael's admission to the Epilepsy Unit at UCSD today. We were eager to break the seizure cycle of ten to twenty- plus tonic seizures during the waking hours which can knock Michael off his feet and into a myriad of objects which could hurt. He was tired of our presence to prevent harm, we were tired of seeing our son seizing so much, especially after having such a great year free of daytime seizures.

Yesterday wasn't a great day. Several tonic episodes in the morning but no harm---- we were there.  Sleeping most of the rest of the day because of a restless night with reportedly little sleep. Michael perked up during dinner noting that my meatloaf wasn't so great (he was right) and that he might want more (of something else) to eat later. He was engaged during The Voice and then Grammie's boyfriend Stephen Colbert's show. Actually, he was more alert than he'd been all day. Barry took him upstairs to complete his nighttime routine and ensured he was tucked in with Katie by his side.

Barry hadn't even made it to his chair when we heard a thud upstairs. Barry,  Meaghan and I raced to find Michael face down on the bathroom tile in the throes of a tonic seizure. I turned his head and cradled it on my lap and swiped his chest with the VNS magnet once, then in another twenty seconds again, then again. No spacing in between now ---- constant seizing motion. Lorazepam. Nothing. It was  clearly over five minutes. We have to call 911. Meaghan called and within minutes the familiar faces of Fire- Rescue Station # 24 were crowding the bathroom and hallway. The questions: how long? What did you give? Gently they eased us out and took over. Nasal Versed. Nothing. Strapped him in a transport chair still seizing. Transferred to a stretcher-still seizing. I said I wanted to go in the ambulance, quickly threw on some jeans and a top, raced outside and got in the front seat. When I turned around I could see the back of Michael's head rhythmically going back and forth . "Still?", I asked at least four different times. They were trying, they assured me. Finally a paramedic, Tim I think, stuck his head in the opening between the front seat and back treatment area. " Do you know how much Versed he had the last time--- we've given him a lot". Then eyeing the road ahead , " we're almost there".

I  hopped out of the ambulance and watched as the paramedics wheeled my still seizing son into an
Emergency Department room where he was met by the ER Attending , a number of nurses and other staff. Barry entered within minutes. They questioned us about history, administered Ativan twice , maybe three times, as we estimated the length of the seizure at this point to be approaching 45 minutes. Vital signs weren't great: racing pulse, high blood pressure , elevated blood sugar. The Attending said something about intubation which made me extraordinarily  scared and temporarily speechless as visions of a comatose, intubated Michael flooded my head. Nooooooooo, I screeched silently.I found my tongue when I heard Barry's desperate voice, "whatever it takes". I said I wasn't prepared to consent to that just as the Neurology Attending, a bespectacled 16 year old (actually 26) walked into the room and coolly and calmly took charge ordering a bolus of Dilantin with a new fancy name (better to sell the old, old drug) and getting Michael to respond to commands even while still seizing. Gradually, the seizure activity decreased then mercifully, stopped. Needless to say Michael was very drugged up, snoring loudly and requiring an occasional thump on the shoulder blade and reminder to breathe! Following a CT scan the team decided a night in the ICU where he could be more closely monitored, was warranted. At this point Barry and I felt comfortable enough with the competence and caring of the ER, Neurology and ICU staff that he drove me home for a few hours of sleep before he returned to the hospital to sit at Michael's bedside in the ICU.

When I walked in the house at 1 AM my mother met me in the kitchen. I caught her up with the night's events and sent her to bed with an admonition to get some rest - I assured her I was confident Michael was in good hands. I opened the door to Meaghan's room and was met by a stare from Michael's assistance dog Katie. Meaghan allowed her to sleep beside her feeling it might allay some of Katie's angst about being away from her guy. I think Meaghan derived a bit of comfort herself. I told Meaghan my plan to sleep a few hours and return for the day shift.

A little before 7 AM , I marched into the hospital with a duffle bag of clothes, Michael's meds and per his epileptologists request, his CBD oil packed in ice (more on that later). Barry's briefing was quick. Michael had and was, sleeping peacefully. I continued to be impressed with the professionals we encountered- the ICU nurse, another Neurology Attending, the Neurology Fellow specializing in epilepsy and the RN epilepsy coordinator who was dashing around to get us out of the ICU and into the Epilepsy Unit.
I was pretty amazed at all that had transpired in less than twelve hours.

I'm a little tired now. This will have to be a two parter. Until tomorrow , know that the CT scan was fine, Michael's day was extremely peaceful and seizure free, doctors were remarkably open-minded, and given the raw fear and impending dread of just a few hours ago, all in all it was a better day.  Hoping again for a better tomorrow and then some.

Sweet dreams Michael.

Wednesday, November 11, 2015

Epilepsy Unfiltered

We're  a few weeks away from a painful anniversary in our household. It'll be twenty six years since we got hitched to the abusive, cruel, callous condition known as refractory or intractable or uncontrolled epilepsy. Of course we had no knowledge of those adjectives back then. We clung to the hope that the medical professionals dangled in front of us--- that some kids actually "grow out of" certain epilepsy types. We had no clue the number of ambulance rides, hospitalizations,      medication trials and errors, medical procedures and so on. We had no idea of the costs of this despicable condition---loss of moments...and days...and months...and years. We simply had no idea.

This last week ranks among our worst ever. When I heard the thump in the upstairs bathroom at 11:30 last Tuesday night I truly was not prepared for the sight that I viewed from the hallway : Michael laying face -up, head adjacent to the shower entrance, feet facing the door. Underneath his head a pool of blood. Blood everywhere actually- covering one front side of his boxers, covering the metal towel bar that was dislodged from its holder, blood on legs and feet. Lots of blood. And then, my bloody scream summoning Barry and Meaghan , Meaghan's hysterical call to 911, Michael unresponsive as I knelt beside him, in his blood, calling his name, witnessing a slight tonic seizure, then another. Sirens and lights,six paramedics and firemen ascend the stairs. Through sobs I explain all I know; I heard a thud, found him like this---bleeding, seizing. A few of them take our place in the bathroom. I step into the hallway making footprints with my bloody feet. Did I mention when I was kneeling beside Michael's pale body, looking at his fluttering eyelids, cradling whatever part of his body I thought wouldn't hurt him; did I mention I thought he might die?

Someone's asking Barry and I medical history questions. When did Barry manage to get dressed? I can hear Meaghan crying. Or is that me? I can't fully hear what's going on in the bathroom, but in what seems like a flash they emerge. Paramedics, firemen, Michael strapped to a stretcher---bleeding and seizing. Meaghan wants to go in the ambulance. They tell us where they're taking him. I say they can't. It's not our hospital. His neurologist isn't there. It's a Level One Trauma Center they inform me. Oh yeah , I know that. Level One trauma. Okay, okay. Barry nods at me, my cue to go with him to the hospital. Did we talk on the way or did I just cry?  We arrive in the waiting room. Meaghan's already there. She tells us they won't let us in until they do whatever they're going to do. We wait. That's when I take in my jeans and feet. Blood spots and smears. Bloodied feet in flipflops. A physical and emotional wreck.  I text Michael's neurologist. She is a friend as well as an outstanding epileptologist. She calls me back right away. What--- it's 1:00?  She's soothing. I calm down a BIT. We're frayed around the edges our little trio. My innocent-looking daughter's cursing and swearing amuses the burly Emergency Department security guard.  We're told we can come back---two of us. The emergency department MD gives Barry and I a report. The CT looks fine. That's good. He has about twelve staples in the back of his head. It's not a deep wound. Jesus. Oh yeah, head wounds bleed profusely. He's very sedated we're told. Ummm. We certainly can see that!Two administrations of Versed, two of IV Ativan, a bolus of Keppra. Keppra? I start in on the ER doc about how adversely Keppra has affected Michael in the past. I hear my anger and frustration. I sense his defensiveness. I keep going though. It's a short ambulance ride; less than seven minutes I say out loud. That's a short time to give all those drugs. Oops, I've offended again. Yes, I agree he was seizing. No I say to the report of tonic-clonic seizures insisting he only has tonic. A little self talk. I'm splitting hairs, They're putting my kid back together. I get a text from Meaghan. Why aren't we telling her what's going on? I've already said we're frayed. Barry and I sit by the stretcher/bed. Michael has a brief tonic. It goes unnoticed. No EEG hook up. Is that odd I wonder. Just parents by the bedside. We won't report these. They're baseline---Michael's normal. We won't let them treat these. Barry and I agree to this without words. He suggests I go home, get cleaned up and come back and then he'll do the same. I pick up Meaghan in the waiting room and hand her Barry's keys. We head up the highway home.

We open the front door. Katie greets us. How did she get out of her crate Meaghan wonders. Meaghan says she put her there when the fire department arrived.  I can't remember Katie at all from a few short hours ago. Where was she when we were in the bathroom?  She must have been terrified. She must have been looking for Michael the entire time we were gone. We take her upstairs with us following bloodstains like breadcrumbs. We stare at the bloody carpet in the hallway- smudged and ground in by numerous footfalls. I tell Meaghan I have to do something about this before my Mom and brother Gary get here tomorrow. Meantime, we survey the bathroom: several blood-soaked towels in addition to some paper ones left behind by the fire-rescue crew are strewn around the floor. There are several pools of  congealed blood, smears of blood on the wall, a large linear crack on the wall, splatters of blood everywhere. We grab a Lysol wipes container and start wiping, square by square, under the cabinets, on the cabinets. Meaghan says she wants to finish cleaning by herself. She's too wired to sleep and she just wants to get rid of it. I get it.

I take a hot shower. It doesn't feel as cleansing as I'd hoped. I change. By the time I'm ready to head back to the hospital, Meaghan is finished cleaning  the bathroom. She wonders how anyone could ever think they could get away with murder. The god damned blood is everywhere! She'll take Katie to bed with her. That should be a comfort to both of them. I kiss her goodnight and head back to the hospital.

I park in the Trauma/Emergency parking lot banking on the fact that hospitals move slowly in finding beds for emergency patients.The nice security guard buzzes me in. Michael's sleeping and still having a brief tonic seizure every five to twenty minutes----still not observed by anyone but us. Barry looks beat. He says he'll stay until Michael is transferred to a hospital room. Minutes later we're told Michael is ready to be transported. We thank the staff for all they've done and what they didn't do. We follow the stretcher through a maze of hallways  to the newest wing of the hospital. The room is very spacious and extremely clean. It is adjacent to the nurses station.  All good. The night nurse is nice. He says the night hospitalist will check in with us soon.  Barry gives me a hug and a kiss and heads home. I drag a chair over to Michael's bedside. I feel exhausted and I think I might even close my eyes and get some sleep. Two hours later, when the sun rises, I am still awake. Michael was snoring and seizing----small tonics more frequent than usual. The night hospitalist arrives. He speaks with me kindly and notes that when Michael awakens from the drugged state he's in, he'll likely be discharged. I'm told the neuro and trauma services as well as the day hospitalist will stop by. I've already told everyone our goal is to get out of the hospital and into the care of Michael's neurologist ASAP. I brought his AM meds with me when I came back to the hospital. We can take this the rest of the way. No need for additional medical intervention beyond the IV drip. 

The day team arrives. The nurse asks what name Michael likes to be called. And me. She says "Can I get you a cup of coffee Mary Lou"? I surprise myself when I respond yes. I drain the dark brown liquid and feel like a different person. Maybe I've never needed caffeine so badly before. I don't know---I'm just grateful for the effect. Barry walks in shortly thereafter. I notice he's still in the same clothes. I ask him if he showered,fully knowing the answer. He used his time at home to catch some sleep. He can do that just about anytime, anywhere. I admire this ability. I do. He wants to know if I want something to eat from a cafe downstairs. I still don't trust my knotted up stomach so I decline. He returns with, and devours, a breakfast sandwich.   I admire this ability. I do.

It's now 8 am. I leave a message with our carpet cleaner to check if it's at all possible to squeeze us in. I briefly explain our situation and the fact my Mom and brother are arriving today. I don't want them to see all the blood. I'd rather not see it again myself. Josh rearranges his schedule. He has a customer for life. Somehow this makes me feel just a little bit more in control. Somehow.

The day hospitalist arrives. He's a bit too jovial for my liking and he seems very surprised we don't want to change any meds until Michael is seen by his neurologist. He says once Michael wakes up he can have a soft diet. What? Just keep quiet Mary Lou, just keep quiet. Nod. He asks how long Michael has had epilepsy. He exclaims with a great big smile on his face, "seems to me you've got 26 years of good karma coming your way!" Nod. Smile. I turn to Barry. "I don't care for him".

I tell our day shift nurse I have brought Michael's morning meds. She explains it's hospital policy to have the pharmacist look at the meds to determine if they're OK to be administered. I retrieve the baggie the meds are in. The nurse grimaces. She says she'll check with the pharmacist. Barry and I look at one another. We know we'll give the meds.  The pharmacist arrives and tells us very kindly she can't approve because the meds aren't in the prescription bottles.. We nod. I return the baggie to my purse. She leaves. After a lot of prodding Michael wakes up briefly. We give him his meds.

The neurologist arrives. She tells us she did a fellowship under Michael's neuro. She's confident her former professor will do whatever is necessary and she doesn't want to introduce any other variables into the mix. We thank her sincerely. One more MD to go and we're out of here!

The nurse tells us the annoying hospitalist won't discharge Michael until he eats some soft food and is much more awake. Maybe two hours more. It's now close to 1:30. The plane arriving with my Mom and brother is due at 1:40. I receive a text from my brother. Their plane is being diverted to Las Vegas. He thinks there's some kind of police action by the airport. We turn on the TV. Sure enough. There's a guy with a high-powered rifle on a fourth floor building in the flight path. The FAA has diverted landings and won't allow take-offs. I contact Meaghan who's been waiting in the cell lot at the airport. She's tired, agitated, annoyed. We all are. In our powerlessness, we all have a good laugh at my brother Gary's expense. We know it's been a long, long day for him as Mom isn't the calmest traveler. They'll be sufficiently shocked when they get here that their day wasn't the worst day. The SWAT activity ends, Meaghan sees planes on the runway and heads to pick up the visitors.. We plead with Michael to wake up and eat a pudding and some applesauce. We show the nurse the empty containers. He is not tempted in the least by the tray with broth, a mashed salmon mess and another pudding. The tray is taken away by a kitchen staffer. No need to explain why it remained uneaten. "PLEASE Michael you have to wake up so we can get out of here!" When he says, "stop bothering me", I feel like he IS waking  up and is very annoyed with us. This is good. He takes a walk with his nurse proving he can remain upright for a few minutes. The surgeon who stapled Michael's head comes into the room. He's another jovial character who I immediately like. He assures us the wound is only about a quarter of an inch deep, and yes, that head wounds bleed profusely. We make arrangements for an office visit to remove the staples in ten days. The hospitalist releases us. Perfect word choice. 

The transport team member arrives promptly. We exit the hospital at 3:30, just moments after our visitors' plane lands. We'll beat them home. Meaghan will fill them in on the way. It will be a different vacation for my brother than we envisioned. That's how it goes with epilepsy.

We arrive home. At this  point, we're hopeful Michael will be back to his old self tomorrow or the next day. At this point, we don't know how wrong we are. At this point, we're happy to see our son and his dog reunited. At this point, we're grateful to be home. At this point, we're thankful the injuries weren't too serious, and we're feeling blessed by the love and support of family and friends.
At this point, we're bruised and scarred but not beaten. We are not beaten, epilepsy. We are not beaten.

Wednesday, July 22, 2015

The Shortest Streak

Two and a half weeks. The time that's elapsed since Michael's previous seizure. The streak prior was a glorious eight weeks. This is the shortest streak since we began our CBD journey last September. I'm not disappointed, discouraged or tempted to change course in any way.
Last night Mike went to an Imagine Dragon concert. He was on the floor front and center. He had a wonderful time. He went to bed after midnight. This morning I thought about waking him at the usual time but opted to let him sleep later.
Then--- I heard the familiar guttural sounds and met Katie in the hallway on her way to get help. It was an intense tonic seizure but shorter than usual, lasting about a minute with an even briefer post ictal phase. Michael was alert enough to swallow his many AM pills within 10 minutes. He slept quietly and woke and came downstairs to breakfast a half hour later. He was taken aback when I told him he had a seizure. All good signs.
I'd prefer that my son never ever have another seizure. I'd prefer we could wean him more quickly off the despicable drugs with a myriad of "side" effects and lack of effectiveness in controlling his seizures for a quarter of a century! I'm still mad as hell that at least one third of those with epilepsy can't be helped by what modern western medicine has to offer. I'm pissed that politicians and bureaucrats are getting in the way of thousands of families wanting access to medical marijuana--- perhaps the last and best hope for their children. I'm enraged by the smug neurologists who have the gall to suggest that parents may be exaggerating the effects of CBD because, you know, they're parents who want this to work.
This I know because I am the mother, because I've lived with this 24/7 for 25 years, because I've seen firsthand the effects of thousands of seizures and observed the physical and cognitive deficits caused by the drugs so readily piled on over the years. This I know because we have weaned off one drug, have reduced two by a third and are halfway through the wean of another. This I know because I see my son standing upright on a paddle board taking in the beauty of a nearby lagoon. This I know because Michael relates repeatedly that he feels he's "coming alive".This I know for sure--CBD is working. We will stay the course.

Sunday, July 5, 2015

Starting Over

So... hopefully tomorrow morning we'll be saying " this is day one of another seizure- free streak" or some variation thereof. Today I was contemplating what I'd do all day after I managed to haul my lazy butt out of bed. Then, even though I was hearing aid-less , I heard familiar rumblings down the hallway and once I finished my race to Michael's bedroom---well--- there he was face down on the mattress in the throes of a damn seizure. So our 8 week streak is over. I sat on Michael's bed, scrunched against the wall looking at the clock, waiting for the tonic movements to stop, watching his lifeless eyes hugely dilated, holding his hand---waiting. It only lasted a minute that I observed. His heart rate slowed, his breaths became less labored, more regular, he settled into a pretty peaceful sleep. Katie took my place on the bed---exactly where she was when I walked in the room! We'll have to practice more "get helps", I thought. These streaks of 8, 9, 13 weeks have made us somewhat complacent. Mea Culpa!
I didn't cry. I didn't feel discouraged. We didn't have a lot of streaks like this in the years before CBD oil. We certainly weren't able to reduce the miserable pharmaceuticals the way we have since being on CBD oil. We did not have the brighter, more aware Michael we see far more often these days. We're not where we want to be, but we'll take this as we patiently make our way.
We'll take this!

Wednesday, May 6, 2015

My Civic Duty

I just served on a jury. It was a personal injury case. The plaintiff was suing the defendant and her parents as a result of a parking lot accident (estimated speed of defendant's car was about 15 MPH). The evidence that the plaintiff's chronic, extreme lower back pain was attributable to THIS accident versus the rear end collision the plaintiff was involved in 4th months prior (THAT case settled)----well---let's just say the evidence was weak. OR one could surmise the plaintiff's attorney's were not quite up to the task. OR the defense attorney was pretty slick in getting those Facebook photos of the plaintiff standing in a rowboat with a beer in one hand and a fishing pole in the other. OR that the plaintiff completed a pain questionnaire PRIOR to the second accident that documented a pain level of 10 (0-10 score; 0 = no pain).

We were only asked to judge whether the second accident was a substantive factor in the harm to the plaintiff. We said no. Twelve out of twelve------NO. We didn't have to proceed through the questions related to past and future medical expenses, pain and suffering, grief, loss and so on because we said NO.

I've now served on three personal injury cases. All three had the same outcome. So much money spent on expert witnesses, court time, lawyers. Lost days at work for jurors that in many cases means more work when they return to their jobs. Stress on the family being sued for upwards of a quarter of a million dollars in this, the latest case.

I object. Objection sustained.

Sunday, March 29, 2015

Dear Doctor

This is to all the neurologists and epileptologists who object to the use of cannabis to control, reduce and eliminate seizures because it hasn't been appropriately studied and isn't approved by the FDA.

Dear Doctor:

You are aware that at least eleven anti- seizure drugs you readily prescribe have been studied by the FDA and proven to cause suicide at a statistically significant rate versus a placebo?

You know, I'm sure, that twenty years ago Felbatol was taken off  the market because deaths due to aplastic anemia were determined to be because of the drug. I believe the number of deaths was 19, 20 or 21--- give or take. You must know. The warning is pretty clear on the Black Box.

You know that among the side effects caused by the drugs you prescribe are liver failure and death, the aforementioned act of suicide, pancreatitis, loss of peripheral vision, severe birth defects, Steven's-Johnson Syndrome and so on and on and on...

You know that the drugs you prescribe for certain seizure types were never studied in clinical trials on the specific seizure type. You know that right?

You know most of the drugs you prescribe were never studied on children. Right?

You know it's a crap shoot trying to find the right drug to control the seizures. I know you do. I can tell because when a drug has failed you say something like  "Well. .. Let's try this one" OR " we could try adding (fill in the blank) and see what that does."

In my quest to control my child's  seizures I have dutifully followed your prescribed medication regimen. My child has endured numerous lab draws to ascertain if any of those despicable side effects are occurring; multiple hospitalizations for status epilepticus; days, weeks, months , years, of seizure and drug -induced confusion--- oh yeh--- dazed and confused indeed. The drugs have failed. ALL of them.

Am I willing to try something that the FDA hasn't approved and big Pharma doesn't control (yet)? You bet I am. You can also bet I'm not going to report it's working if it's not. You're not going to get away with insulting my ability to ascertain a reduction in seizures. " Mom reports" is not a phrase worthy of eye- rolling. I know when I'm not seeing seizures. You KNOW that!

I live this every day 24/7. You don't Doctor. You don't.


Epilepsy Mom

Tuesday, March 24, 2015

Changing Course

In preparation for Epilepsy Awareness Day Thursday, March 26th I've been reflecting about just what on earth all of us impacted by this despicable condition can do to effect real change. Many of us write blogs read by other bloggers who share the same misfortune. Others post on Facebook in the hope that some of our "friends" who do not have a personal experience will somehow "get" ours since much of what we write is gut wrenchingly honest and emotionally raw. We even use curse words. Some of us--- a lot!

So... What can we do? I'm really asking --- I do not have an answer. I've written a book, I've appeared on local TV multiple times, we've had numerous newspaper articles written about us, I served on the Epilepsy Foundation Board for 15 years, we have donated thousands of dollars, I've spoken at epilepsy seminars, I have opened up to friends and family (a few) about some of the bitter truths of parenting a young adult with epilepsy. And yet sometimes I feel like I'm spitting in the wind. I'm not getting younger. We've been at this for over 25 years. I want more than drugs with a host of side effects, I want medical marijuana legalized in every state and re-scheduled federally, I want to be free of the fear my son could die, I want a better life for Michael. I want it ALL. I want it NOW.

If you're still reading this and you have a suggestion--- by all means leave a comment. Increased awareness is a good start but I think we need to change tactics to reach that finish line sooner. Please. Help.

Friday, February 20, 2015

Another Streak

Once he woke up following an early morning seizure today--- yes today----- the day after I posted about the good effects of CBD! Anyhow--- once he realized what happened he announced " we start another streak beginning today".


We do.

Thursday, February 19, 2015

Michael and CBD Oil-Five Months In

September 9th, 2014- 1st dose of Realm of Caring CA CBD oil. December 9, 2014 first lengthy early morning tonic seizure since starting the oil. Neurologist is confident enough to start a Lamictal wean in late November.

January 14, 2015. Another early morning tonic seizure. Parents note bedtime meds were not taken the night before. Duh! This one has a reason for happening and parents not happy with themselves.

Managed to decrease daily dose of Lamictal by 200 mg. January labs indicated a real jump in Felbatol level. Now working on decreasing Felbatol by 200 mg every two weeks with "check-in" to neuro when down by 600mg.

So..... Happy, very happy with the decreased frequency of the nasty morning seizures. Happy, really happy with the quick recovery when they did occur. Grateful to be part of the RoC community and hopeful that CBD oil may indeed be the answer in our case.

But can I just say this? Drug withdrawal is a BITCH. Enough said. For now.