The call came in at 7:33 p.m., just as we were wrapping up dinner. Mary's voice was quavering on the other end of the line. I knew Calvin had had a seizure in her care. I felt sorry for all of us.
Michael had already paid the bill, so we and a friend were able to exit our picnic table and jet the nine miles back home. It had only been four days since Calvin's last grand mal, which was just four days after the previous one, which was only six days after having had three in thirty hours. In all, he's had nine grand mals in a month's time. That's nine too many, even among thousands of them in his seventeen years.
I'm not sure what is going on. Perhaps Calvin's epilepsy is progressing, having never been snuffed out. Maybe he has outgrown his Keppra dose or maybe it is making things worse. What if the THCA cannabis oil I've been making for nearly eight years just isn't hacking it anymore? Epilepsy is wretched. It's a moving target. Options are few and unattractive. Having mostly forsaken pharmaceuticals since so many have failed him, it seems they may be the only thing left to try—again.
One of the drugs we are considering is called Fycompa. It is one of the few antiepileptic drugs specifically listed for treating tonic-clonic (grand mal) seizures. Like all other anti-seizure drugs, its side effects are wicked; the list is long, and some of them can be dangerous, even lethal. Moreover, since Calvin can't speak, it's nearly impossible to tell if he suffers many of these:
headache, dizziness, drowsiness, anxiety, lethargy, irritability, nausea, vomiting, stomach pain, bruising, weight gain, loss of coordination, hives, difficulty breathing, swelling of your face, lips, tongue, or throat, skin rash, fever, swollen glands, muscle aches, severe weakness, unusual bruising, jaundice, mood or behavior changes, fear, panic attacks, trouble sleeping, agitation, hostility, aggression, restlessness, hyperactivity (mentally or physically), thoughts about suicide, severe dizziness, vertigo, lightheadedness, trouble walking, loss of balance or coordination, feeling very weak or tired, accidental falls, memory problems, confusion, hallucinations.
No one would want to put their child on these kinds of drugs, but the alternative could be just as ugly. Calvin has tried nine antiepileptic pharmaceuticals—at one point taking a high-dose, three-drug "cocktail" (I hate the use of that descriptor)—starting when he was just a toddler. None of them worked to stop his seizures, and yet he has suffered both short-term and prolonged side effects. I have little doubt the drugs—especially the benzodiazepines—ruined his developing brain, causing permanent problems beyond the neurological anomalies present even before his birth.
So, before we reconsider another pharmaceutical drug, I think I should try reducing his Keppra. That may seem counterintuitive, but most antiepileptic drugs have the potential of exacerbating seizures, and it's probably not that risky since he is having so many seizures anyway.
If I sound exhausted, even peeved, it's because I am. At the moment, I'm not up, but I'm not down, either. I'm just in a kind of daze of feeling hopeless and lost. That's what having a child with epilepsy does to a parent.
But for now, Calvin is content hanging out with his us while recovering from yesterday's seizure. Later, a friend is coming over to shoot the shit around the fire pit with us. We'll tell funny stories and jokes, and I'll laugh until I cry in a wicked mix of emotions knowing that, despite our troubles, somehow we'll get by.
Feeling such huge love and compassion for you all. Also great awe and respect for your ability to do what needs/demands to be done for such an eternity of time. HUGS!ReplyDelete
love you, rita! xoxo, christyDelete