first steps (video)

It occurred to me this morning (strange that I don’t remember it having occurred to me before) that Calvin, who is eight and a half, has never taken independent steps without being under the influence of powerful, sedative, anticonvulsant drugs. His epilepsy diagnosis came two months after his second birthday at which time, because of his other neurological deficits, we were still holding his hands to help him along, not unlike most parents do with their infants.

I have a few videos of some of Calvin’s first steps in the summer after his second birthday. In them, he teeters and tips as if on a ship in the high seas. He catches and rights himself, but overcorrects and teeters to the opposite side. At that point in time he was taking more than his fair share of Leviteracetam (Keppra) aimed at thwarting his seizures, albeit unsuccessfully.

All anticonvulsant medications are sedatives, even the ones that provoke paradoxical hyperactivity and insomnia in some children. They all can cause dizziness and lack of coordination. Most cause lethargy, weakness, gait ataxia, visual disturbances and nausea. I could fill pages just listing the side effects from these drugs that the pharmaceutical industry makes billions selling.

It’s hard to say, but my gut tells me that Calvin would be walking independently if it were not for his years’ long, sustained and massive intake of these chemicals. He still might have trouble negotiating stairs and rough terrain due to his poor vision and muscle tone, but my best guess is that his balance would improve if he weren’t dizzy all of the time or perhaps experiencing vertigo, another side effect of some of the drugs. It makes me ill to think of the millions of the world's parents who must feed their tiny babies, toddlers and tykes unknown quantities of multiple anticonvulsant narcotics, barbiturates and benzodiazepines with few other viable choices beyond letting them seize uncontrollably until they might eventually expire.

I dream about stripping Calvin of all the drugs, detoxifying his fragile system, getting him back to the place where a little boy should be, out from under the wicked and iron thumb of pharmaceuticals. The only way possible, except for the highly unlikely chance of outgrowing his seizure disorder, is to find a cure. But to do that, we need a major leg up in terms of awareness, advocacy and funding: steps that Calvin will never be able to take on his own, but that I can.

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  1. Christy-

    My family is proof that you are succeeding at raising awareness of this horrible disorder. We were quite unaware of the trials of epilepsy before Bess met Calvin at school. We now talk about it often and have told friends and family about Calvin, his amazing parents and your blog. Thank you for continuing to enlighten us all through your exquisite writing and heartfelt, honest accounts.

  2. darcee,
    you are so sweet to write. i am sorry we missed the carnival. very lame of me. hope to see you again soon. xoxo to you and your girls.

  3. Seriously, Christy, what would happen if you stopped all the drugs? What is the worst, what is the best? Have you wrestled this through with Calvin's doc?

  4. no one really knows but the chances are that calvin would suffer status epilepticus, a serious, often lethal, prolonged seizure. seizures beget seizures. we have seen more progress in calvin's development since he's gone longer between seizures. 58 days seizure free today. if he goes a year we can begin to wean his meds, perhaps even earlier. xo