5.25.2015

vigil strange I kept on the field one night

Every Memorial Day, I post this passage by Walt Whitman for its beauty and poignancy. While my mind is focused on veterans of war who have died on the battlefields, the images this writing provokes give me pause to remember and honor all of the children my friends and loved ones have lost. This goes out to their parents:

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville

5.23.2015

caregiver woes

Of recent, when speaking to my mother on the phone, I sense her fading away. These days, she rarely responds to Mom, but rather to her name, Harriette. My brother Matt, who cares for her, hasn’t called her Mom in years. Sometimes, she becomes silent on the other end of the line and I know she is weary of conversation, and so I must simply hang up.

Our conversation the other day got me to thinking whether or not Calvin knows his name. When I call his name he doesn’t respond, doesn’t look at me, doesn’t register in any way, is silent on the other end. Ours is a relationship of cues, physical and verbal. Often, I sing to him or click, whistle, tweet, hum or otherwise make silly sounds. We spend much of our time together hugging, and I shower the boy with kisses and raspberries whenever he’s in my embrace. Though Calvin is eleven, developmentally he is still much like a baby, mouthing his plastic toys and playing with them like an infant might. Michael tells me Calvin will not be much different in years to come. I think he’s probably right.

While watching my son, I thought about my mother again, thought back to the conversation I had with two of my four brothers and my sister regarding her care.

“Remember,” I said to them, “if Mom stops eating or drinking, don’t force-feed her or push fluids.”

I went on to explain what my mother-in-law, a former Hospice nurse, told me: that, when it comes to someone with Alzheimer’s, the refusal to eat or drink marks the start of the dying process, rendering digestion and intake of fluids uncomfortable, perhaps even painful, for a body that is shutting down. I recall my mother not wanting to get to this stage, the stage where she doesn’t really remember us, except fleetingly. But, under the care of my brother, she has managed to stay mostly upbeat and still loves life. At eighty-five, I hope she goes quickly in the night before she’s consumed by fear, confusion and panic, all hallmarks of late-stage Alzheimer's.

While bellying up to the bar the other night with Michael, I was doing my usual worrying about Calvin. He’d had a bad fall recently at school—landing square and hard on the back of his head—his balance and consistency, though improving, remaining precarious at best. I wonder about the future of his care, wonder if he’ll live with us until we are too feeble to carry on. I worry that no one else will love him the way we do. He’s a cute, affectionate little boy now, but what will happen if or when he becomes a man? What will happen if we’re not around? I’ve had fugitive thoughts about taking him with us when we die, just so he won’t have to suffer neglect or abuse at the hands of strangers who exploit the vulnerabilities of the disabled. I worry about who will give him his seizure meds on time—morning, noon and night—and if they’ll give him the right amount. I worry about who will make his cannabis oils, who will care about the side effects of the meds, who will change his diapers, shave his face, give him water, feed him, know when he is hurting, cuddle with him when he gets injured or feels bad. These woes are enough to last a thousand lifetimes, yet worrying won’t extend my life even one day. The best I can do is to love him and to click and clack and smooch and smack my lips against his pretty skin, like my mom did with me, and still does to this day, even when names escape her.

Mom, Calvin and me, December 2005 Photo by Michael Kolster

5.18.2015

the trouble with keppra

Nary a moment goes by when I'm not preoccupied with Calvin's well-being, behavior, seizure control, antiepileptic drugs and their side effects. After Calvin's February visit to the emergency room because of status epilepticus (serious, sometimes lethal, uncontrolled seizures) I spoke with his neurologist and pediatrician. Both of them, who I very much respect, thought it might make sense to increase Calvin's Keppra to account for his recent weight gain, thereby eliminating one variability in his regimen making it easier to analyze the effect of changes to his clobazam and/or cannabis oils. Unfortunately, I was panicked, and too quick to agree before giving it more thorough consideration. As soon as I added another 125 mgs of Keppra to Calvin's nighttime meds—his Keppra dose already well above the standard pediatric therapeutic level and therefore possibly toxic in some ways—I realized I had nevertheless introduced another variable, perhaps more consequential than what gradual weight gain had done to his dose over time.

Soon after the increase, Calvin's behavior deteriorated. He had been much calmer for the most part since reducing his clobazam and since gradually increasing his cannabis oils. He began flailing on the changing table again, woke nearly every morning irritable, was frequently agitated and fell into hysterics more often, sometimes on a dime. Since then, Calvin has suffered two more bouts of status epilepticus despite the increase in Keppra. So I've been considering dropping his dose back down while temporarily pausing the clobazam reduction and any increases in cannabis (to limit variables) hoping his behavior will improve.

Before making this change, however, I thought it best to reacquaint myself with a list of Keppra's side effects, a drug known mostly for its negative impact on behavior, albeit one that often offers decent seizure control and which most people tolerate well enough. This is what I found (listed below in alphabetical order) and though I can't know for sure everything that Calvin is feeling and experiencing since he can't tell me, it has confirmed for me what I need to try for Calvin's—and for our—quality of life, which is to take the extra 125 mgs of Keppra away. I've highlighted the side effects I think might be bothering Calvin, some of which, however, are the same ones I could attribute to benzodiazepine withdrawal, except that they were most evident in the days and weeks after the increase in Keppra:

More common
  • Aggressive or angry
  • anxiety
  • change in personality
  • chills
  • cough or hoarseness
  • crying
  • depersonalization
  • diarrhea
  • dry mouth
  • euphoria
  • fever
  • general feeling of discomfort or illness
  • headache
  • hyperventilation
  • irregular heartbeats
  • irritability
  • joint pain
  • loss of appetite
  • lower back or side pain
  • mental depression
  • muscle aches and pains
  • nausea
  • painful or difficult urination
  • paranoia
  • quick to react or overreact emotionally
  • rapidly changing moods
  • restlessness
  • shaking
  • shivering
  • shortness of breath
  • sleepiness or unusual drowsiness
  • sore throat
  • stuffy or runny nose
  • sweating
  • trouble sleeping
  • unusual tiredness or weakness
  • vomiting
Less common
  • Bloody nose
  • burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
  • clumsiness or unsteadiness
  • discouragement
  • dizziness or lightheadedness
  • double vision
  • earache
  • feeling of constant movement of self or surroundings
  • feeling sad or empty
  • increase in body movements
  • loss of bladder control
  • loss of memory
  • mood or mental changes
  • outburst of anger
  • pain or tenderness around the eyes and cheekbones
  • problems with memory
  • redness or swelling in the ear
  • seizures
  • sensation of spinning
  • shakiness and unsteady walk
  • shakiness in the legs, arms, hands, or feet
  • tightness of the chest
  • tiredness
  • trembling or shaking of the hands or feet
  • trouble concentrating
  • unsteadiness, trembling, or other problems with muscle control or coordination
Incidence not known
  • Attempts at killing oneself
  • being forgetful
  • bleeding gums
  • blistering, peeling, or loosening of the skin
  • bloating
  • blood in the urine or stools
  • bloody, black, or tarry stools
  • blurred vision
  • changes in vision
  • chest pain
  • constipation
  • dark urine
  • difficulty with moving
  • fast heartbeat
  • general feeling of tiredness or weakness
  • high fever
  • increase in body movements
  • indigestion
  • itching
  • light-colored stools
  • muscle pains or stiffness
  • painful or difficult urination
  • pains in the stomach, side, or abdomen, possibly radiating to the back
  • pale skin
  • pinpoint red spots on the skin
  • red skin lesions, often with a purple center
  • red, irritated eyes
  • sores, ulcers, or white spots on the lips or in the mouth
  • stomach pain, continuing
  • swollen glands
  • swollen joints
  • thoughts or attempts at killing oneself
  • trouble with balance
  • twitching, twisting, or uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
  • uncontrolled jerking or twisting movements of the hands, arms, or legs
  • uncontrolled movements of the lips, tongue, or cheeks
  • unexplained bleeding or bruising
  • unusual bleeding or bruising
  • upper right abdominal or stomach pain
  • weight loss
  • yellow eyes or skin

5.16.2015

jekyll and hyde

The two-and-a-half-hour drive to Boston, usually drudgery, was made worse by the shrieking fiend sitting next to me. The traffic didn’t help, nor did the string of drivers texting or otherwise being distracted, mostly by electronic devices, from driving straight and well. We landed on schedule, this time having left the stroller at home, but not having left the extra diapers and wipes, the extra set of clothing, the more than half-dozen bibs, the handful of kerchiefs, the precisely chopped-up fruit and sandwich and vegetables, the toys, the extra water, the cannabis oils drawn up into various syringes then capped, the yogurt, the spoons, the spatulas, the Keppra the Diastat, the extra meds in case we got stranded, the ibuprofen the Tylenol the rectal thermometer the suppositories the cell phone the paperwork and the magnesium citrate pills.

“I hope Calvin isn’t like this during the appointment,” I yelled up to Michael, who was driving us, “Maybe he’ll surprise us.”

And he did. Calvin was stellar at his annual neuro-ophthalmology appointment. He walked most of the way from the car to the hospital, stood erect and still in the elevator, albeit staring at the overhead lights, sat patiently in a big chair while I fed him his lunch, walked steadily, didn’t whine, didn’t drop down, didn’t go batshit crazy, sat in the examination chair by himself. He didn’t fuss when they rubbed his scalp with alcohol then stuck four leads on his head then made him look at a gridded screen in a darkened room while sitting on Michael’s lap as I held his chin and they patched each eye trying to determine how well he sees with his glasses on (20/60 - 20/100). He even smiled and giggled when Dr. Strominger put drops into his eyes to dilate his pupils.

Unfortunately, the trip home proved to be as bad as the trip down. It was like we had two kids: one Jekyll, the other, Hyde.

I know this Hyde fellow way too well. He appears in the days and hours prior to a seizure. He drops down to the ground often, whines, screams, grinds his teeth, drools, walks in circles, has warm skin, metallic breath, red hands and ears, a rashy chin and goes completely hysterical at times, rubbing and snapping his fingertips in a frenzy inches from his face. By Thursday, there was no doubt Hyde's appearance meant our boy was going to have a seizure. Sad thing was, he had several: two grand mals in the wee hours of Friday morning, a series of partial seizures for most of the rest of the day and two more last night.

It is unclear if my first batch of THC rescue medicine helped. Perhaps the dose is too small to have had any significant effect on the seizures. Certainly, it helped Calvin sleep, but it did not thwart the serial partial seizures, the sleep and wake-to-seizure cycle. For those, I finally decided to give him the Diastat rectal Valium to avoid the unstoppable and dangerous seizures that sometimes land us in the hospital. It worked. Kind of.

Calvin will likely go eight to ten more days seizure free. This is his cycle, and has been for the good part of a year. If I look back at last year's calendar, besides the withdrawal episodes, he is having about the same number, if not fewer, seizures as he did when he was taking three times as much benzodiazepine and no cannabis. In my mind, this bodes well for the cannabis and for getting him off of the benzo since it is not a long-term solution for our son.

So, we'll slog through these next six months of weaning the addictive drug and hope Calvin can thrive and survive. We'll have to deal with this monster Hyde plenty more times, but hopefully he'll respond well to my cannabis potions and hopefully, without too much trouble, we can find the dosing sweet spots necessary to improve his quality of life while containing his seizures. Too bad we can't just ask Dr. Jekyll.

My little Hyde:

5.15.2015

little bird

My little bird is seizing now, on and off since one this morning. Hoping for this cycle to break, and soon. No child should have to suffer like this. No thanks to benzodiazepine withdrawal.

5.13.2015

sprung

Finalamente! Spring has sprung me from the jail which was the inside of my home for too many bitter cold and snowy months. Green is the new white. A sponge of tender blades and moss has replaced the brittle ice under foot. Now, we can romp outside where the sweetness of May swirls around us from clouds of magnolia and witch hazel, our faces very slightly tawny as we lift them, with much gratitude, to a warm Maine sun.