There’s nothing sadder than a sick child, save one whose health and well-being are already severely compromised by a chronic illness and the drugs used to treat it. To further complicate matters, the new drug we added to Calvin’s two-drug regimen—Keppra—can cause a greater incidence of infection, whether viral or bacterial, and since illness triggers seizures we are faced with a drug meant to stop Calvin’s seizures but that puts him at a higher risk for the illnesses that can trigger them; a vicious cycle to say the least.

Yesterday, Calvin traipsed around the house with his nurse in tow, like the little Energizer Bunny, even though his throat was red and sore, his nose dripped like a faucet, his voice was swollen and hoarse, and he coughed and sneezed and wheezed. His appetite has been waning again and his eyes hung at half-mast all day. But the drugs just wouldn't allow him to settle and I worried, with all that activity, that he’d make himself even sicker.

After a night of difficult breathing he woke up crying rubbing his head, either from his sore throat, a headache or both. Nevertheless, we had to cram five and a half seizure tablets down his throat plus half of a synthetic thyroid pill and half of a Tylenol, all on an empty stomach as tears rolled down his cheeks. “He’s so dutiful,” I told Michael with a sad frown on my face, “such a good boy,” I added, just as Calvin rolled over and fell back to sleep.

And later, when he seemed to be feeling better, I put him into his johnny-jump-up while I finished some important paperwork. Out of the corner of my eye I noticed he stalled and was staring at the ceiling. I hurried to his side to see the familiar patchy red cheeks and the tell-tale swallowing sound amidst an absence of breaths. “He’s having a partial seizure,” I exclaimed to Michael, as I proceeded to unbuckle and lift him out of his jumper. I laid him on his side on the couch hoping he didn’t roll into a tonic-clonic (grand mal) seizure like he has so many times before. Forty-five seconds had passed when he came out of it. These are the seizures most people wouldn’t catch, I thought, so faint and insidious, yet in clusters so menacing and harmful.

I was just saying to the nurse yesterday how Calvin usually has seizures at the onset of an illness, sometimes before symptoms appear, and that if he can avoid one this time it bodes well for the new drug. But in the back of my mind I’m always keenly aware that no matter what drugs—or combination of drugs—and dietary therapy we try, no matter how high we take him on his doses, he just keeps on having seizures.

Recently, after a bad seizure interrupted 47 days of seizure freedom we increased his Keppra and now, only twelve days later, he’s having seizures again. I wonder if I’ve slept through any of them, so stealthy, silent and macabre. I fear that I’ll miss one that will plant him face down into his pillow, comforter or mattress and that’ll be the end of him.

And so it goes that my sweet little boy continues to suffer these insidious seizures despite a mind clouded in chemicals and a body racked by their side effects, and with no cure in sight. There just isn’t anything sadder.

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  1. Dear Christy,
    I'm sorry for what Calvin is going through. I imagine you've already tried to suspend any drug and I guess it didn't work. Let's hope all together a cure will be found to this insidious illness.

  2. dear federica,
    so nice to hear from you. calvin just had a second seizure just like the one this morning. i hope he doesn't end up having a whole bunch like he's been known to in the past. he is so very sick with a bad cold. poor little guy.

  3. I pray every day that a cure is found for your precious little man and all the other little children who fight this horrible affliction. My step-son is Tom Story, he said he knew you and your husband when you lived in California. He is the one who sent me a link to your blog, and I am very thankful that he did. God bless you and your little angel. Monique Story