Not one day goes by that I don’t walk under the shadow of epilepsy at least once. Constant reminders of the sorry state our son has been living in for nearly six years greet me around every corner.
Yesterday morning while I was feeding Calvin breakfast I think I discovered the source of his inconsolable pain in the immediate wake of Tuesday’s seizure. He had bitten his tongue, badly enough to snap him out of his postictal daze, but I hadn’t noticed the crimson bite marks until today. As far as I know Calvin had never bitten his tongue during a seizure before but it seems, with this heinous disorder, there is a first for everything.
Just after noticing the wound I had to give Calvin an additional 125 mg of Keppra anticonvulsant, buried in his yogurt, in hopes of knocking out his seizures once and for all. It’s something that we’ve been trying in vain to do since his diagnosis by constantly increasing his medications, adding on medications and changing medications. This time I convinced his neurologist’s nurse to agree to reduce one of Calvin’s other anticonvulsant drugs at the same time (one that has had questionable efficacy) something docs don’t seem to make a habit of because they want fewer variables and they don’t want to risk giving up any perceived seizure control. I’m usually with them on that, but in my experience the constant increases in medications always come at a cost to my son’s developmental progress and quality of life yet haven't yet stopped the seizures.
After breakfast we took a ride to our favorite coffee shop in the next town over. We stopped off at our friends’ house to deliver some chocolate chip cookies welcoming them home after a six-day stint in the hospital with their six-year-old son. He’d been admitted because of a virus that was seriously affecting his respiration and he’d been in and out of the pediatric intensive care unit (PICU) needing oxygen for dangerously low nocturnal desaturations. The boy has an extremely rare genetic condition called MECP2 duplication syndrome that has compromised his development and muscle tone, making him an easy victim for pneumonia from something as benign as a common cold and possible prey for seizures.
Stepping into their house I was greeted by my dear friend Sarah and her smiling little Jacob. He had a healthy glow about him that made me very happy. I embraced them both and began to cry, all my worry for them raining down my face. I was reminded of the countless times we’d been in the PICU with Calvin—the viruses, the pneumonia, the status epilepticus, the emergency intubations, the brush with death during a forty-five minute seizure. I knew her worry and had claimed it as my own.
And though I walk in epilepsy’s shadow daily, it is under that same dark cloud that I’ve met some extraordinary men, women and children who lend their brilliance and energy, can make the sky rain tears and the universe burst with heartaching love causing all the hateful, unwelcome, inevitable pain, sorrow and suffering of epilepsy to become something close to bearable, if not dissolving it even just a little.
Please share Calvin's story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com
Donate to MECP2 duplication syndrome.
Yesterday morning while I was feeding Calvin breakfast I think I discovered the source of his inconsolable pain in the immediate wake of Tuesday’s seizure. He had bitten his tongue, badly enough to snap him out of his postictal daze, but I hadn’t noticed the crimson bite marks until today. As far as I know Calvin had never bitten his tongue during a seizure before but it seems, with this heinous disorder, there is a first for everything.
Just after noticing the wound I had to give Calvin an additional 125 mg of Keppra anticonvulsant, buried in his yogurt, in hopes of knocking out his seizures once and for all. It’s something that we’ve been trying in vain to do since his diagnosis by constantly increasing his medications, adding on medications and changing medications. This time I convinced his neurologist’s nurse to agree to reduce one of Calvin’s other anticonvulsant drugs at the same time (one that has had questionable efficacy) something docs don’t seem to make a habit of because they want fewer variables and they don’t want to risk giving up any perceived seizure control. I’m usually with them on that, but in my experience the constant increases in medications always come at a cost to my son’s developmental progress and quality of life yet haven't yet stopped the seizures.
After breakfast we took a ride to our favorite coffee shop in the next town over. We stopped off at our friends’ house to deliver some chocolate chip cookies welcoming them home after a six-day stint in the hospital with their six-year-old son. He’d been admitted because of a virus that was seriously affecting his respiration and he’d been in and out of the pediatric intensive care unit (PICU) needing oxygen for dangerously low nocturnal desaturations. The boy has an extremely rare genetic condition called MECP2 duplication syndrome that has compromised his development and muscle tone, making him an easy victim for pneumonia from something as benign as a common cold and possible prey for seizures.
Stepping into their house I was greeted by my dear friend Sarah and her smiling little Jacob. He had a healthy glow about him that made me very happy. I embraced them both and began to cry, all my worry for them raining down my face. I was reminded of the countless times we’d been in the PICU with Calvin—the viruses, the pneumonia, the status epilepticus, the emergency intubations, the brush with death during a forty-five minute seizure. I knew her worry and had claimed it as my own.
And though I walk in epilepsy’s shadow daily, it is under that same dark cloud that I’ve met some extraordinary men, women and children who lend their brilliance and energy, can make the sky rain tears and the universe burst with heartaching love causing all the hateful, unwelcome, inevitable pain, sorrow and suffering of epilepsy to become something close to bearable, if not dissolving it even just a little.
Please share Calvin's story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com
Donate to MECP2 duplication syndrome.
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| Our dear friends Luke, Jacob Diego and Sarah |
Christy. I have lived with epilepsy my whole life. I been in hospitals from Bangor to Boston. I got no results. 20yrs ago I moved to NH. About 5 yrs after starting a support group I met a doctor we had as a guest speaker. In the fall of 96 We had Dr. Vijay Thadani. He is an associate professor of neurology@ Dartmouth College. He is what you call an epileptologist. He speciaizes in the field of epilepsy. He made suggestions of what my current neurologist could do to.possilby get results. When I told the other doctor he refused to consider the suggestions made. I told him I wanted a second opinion.
ReplyDeleteI started seeing Dr. Thadani. He went over my medical history. Started me in testing in Jan of 97 to see if Id be a candidate for surgery. I was. I had a 75% chance of being seizure free. It took alot of tests. Before the final surgery. On sept 22,97 I had a temporal lobectomy. It knocked my seizures from 12-14 per month sometimes more to one every 6 months at the most.
Dr. Thadani and the Neurosergeon Dr. David Roberts were not satisfied. So on March 17 2008 They did a VNS implant. I am happy to say next month make 4 yrs since Ive had a seizure. Before this last surgery I was taking 4700 mg a day of medication. I am down to 2000 mg. The goal is to take me off as much as possible. If you want infornmation on the doctors at Dartmouth call me. I have the number for Dr. Thadani. Maybe he can referr you to a pediatric neurologist or maybe he will take your case I dont know. I know you might get results.
dear vickie,
ReplyDeletewe are very happy with calvin's neurologist. she is an epileptologist and a PHd and MD. as far as we know calvin is not a candidate for surgery and is too young still for the vns. i have become very knowledgeable about epilepsy and its treatments. thank you for your concern. it means a lot.
christy