friday faves - 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 now nearly nine 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 over corrects 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 or the possibility that medical marijuana could stop his seizures, 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. You can help, too: http://www.calvinscure.com



  1. Sophie began seizing and being medicated when she was three months old. She walked at three years -- and quite well, actually. That was despite the drugs, so who the hell knows? I have often fantasized about taking away all the drugs and did just that many years ago. For nearly two years she was on only a tiny amount of one drug. She wasn't seizure free but she was "better." Puberty was a nightmare, though, and we were forced to try new ones.

  2. Just reading about vitamin D and reducing epilepsy seizures. Very interesting. Remember Phantom Lake pool and a bunch of tanned, chlorine bleached blonde kids by the end of summer? Surprisingly, they were only getting Vitamin D between 11am and 3pm since it is so far North Latitude. Fall, Winter, Spring? Zero UVB for Vitamin D development. What can people in the Northern States do to boost their Vitamin D for kids with Epilepsy? "Normal" summers would have them running around in shorts at a beach boosting their little supplies. Go Calvin!