I hope you'll forgive the lengthy comment. I am so filled with gratitude for you and your extraordinary blog, I couldn't let this Thanksgiving pass by without putting my thanks into words.
I have an (almost) eleven-year-old son who also suffers from grand mal seizures. He has since his second day of life. About a year ago he had a terrifying status epilepticus "event"-- probably caused by too large of an increase in one of his last resort AEDs.
Our med options were looking bleak, so our Neuro sent us to Children's Hospital (Boston) for a consult. The Epilepsy team in Boston wanted to set up long-term monitoring of our son’s brain so that a slew of intensive and invasive tests might tell us if our son would be eligible for brain surgery.
(As you know, in the medical world, having the option of cutting into your child's brain is considered good fortune.)
The Boston brain spelunking mission would include a rather abrupt "wean" of our son’s seizure meds (clobazam and trileptal) – the intention being that the withdrawal would induce multiple seizures – seizures that could be monitored and captured, in hopes of finding a single troublesome spot in the brain from which the seizures were originating.
If we were indeed the “lucky winners” in this grotesque lottery, they'd find the focal point, and if the “focus” didn’t sit in a part of the brain that controls speech or movement, they'd cut it out.
Maybe it would help. Maybe it wouldn’t. Maybe he’d get better. Maybe he’d get worse.
It felt like an impossible risk to take.
The doctors seemed to think it was an impossible risk not to take.
Christy, it was your beautiful, fierce, profoundly insightful and intelligent writing about your journey with Calvin that helped me KNOW that it was an impossible risk to take without first exhausting every other possibility.
After a three hour long consultation, I was able to convince the docs that I couldn’t, in good conscience, allow an aggressive wean of my son’s clobazam , let alone even entertain the idea of brain surgery, without first trying medical marijuana.
Having been so well-educated (and emboldened) by your blog, the docs had no choice but to listen … and agree.
We started Charlotte’s Web eight months ago, and my son hasn't had a seizure since.
We don't take a day of it for granted. We know epilepsy has found its way around every other substance we’ve used to curtail it for a time, but we remain hopeful. He’s still on clobazam and trileptal, but someday we hope to follow in your footsteps and begin a very slow wean. Until then, we are just so grateful we are not in the surgery ward. We owe so much of the gift of this Time to you.
So this Thanksgiving, I give my deepest and most heartfelt thanks to you and Michael and to the biggest, most beautiful pathfinder of them all, dear, sweet, Calvin.
dear anonymous,i hope you saw my comment below which i posted years ago. i just reread your comment above. how is your son doing? i hope all is well with you and yours. christy
you've made me weep uncontrollably. thank you. it feels so cleansing and i've felt the need to do more of it since my mother died.
i am so glad that your son is doing so well on the charlotte's web. we've thought of trying it for calvin but we are doing some other things first. i
'd love to know where you live and hear more about your story. if you want to, you can post another comment to this blog including your email and i won't publish it but i'll have your contact info.
thank you for this most wonderful thanksgiving gift of gratitude and love.
I really loved listening to this and watching the images -- thank you for posting it. So dreamy and romantic --
ReplyDeleteDear Christy,
ReplyDeleteI hope you'll forgive the lengthy comment. I am so filled with gratitude for you and your extraordinary blog, I couldn't let this Thanksgiving pass by without putting my thanks into words.
I have an (almost) eleven-year-old son who also suffers from grand mal seizures. He has since his second day of life. About a year ago he had a terrifying status epilepticus "event"-- probably caused by too large of an increase in one of his last resort AEDs.
Our med options were looking bleak, so our Neuro sent us to Children's Hospital (Boston) for a consult. The Epilepsy team in Boston wanted to set up long-term monitoring of our son’s brain so that a slew of intensive and invasive tests might tell us if our son would be eligible for brain surgery.
(As you know, in the medical world, having the option of cutting into your child's brain is considered good fortune.)
The Boston brain spelunking mission would include a rather abrupt "wean" of our son’s seizure meds (clobazam and trileptal) – the intention being that the withdrawal would induce multiple seizures – seizures that could be monitored and captured, in hopes of finding a single troublesome spot in the brain from which the seizures were originating.
If we were indeed the “lucky winners” in this grotesque lottery, they'd find the focal point, and if the “focus” didn’t sit in a part of the brain that controls speech or movement, they'd cut it out.
Maybe it would help. Maybe it wouldn’t. Maybe he’d get better. Maybe he’d get worse.
It felt like an impossible risk to take.
The doctors seemed to think it was an impossible risk not to take.
Christy, it was your beautiful, fierce, profoundly insightful and intelligent writing about your journey with Calvin that helped me KNOW that it was an impossible risk to take without first exhausting every other possibility.
After a three hour long consultation, I was able to convince the docs that I couldn’t, in good conscience, allow an aggressive wean of my son’s clobazam , let alone even entertain the idea of brain surgery, without first trying medical marijuana.
Having been so well-educated (and emboldened) by your blog, the docs had no choice but to listen … and agree.
We started Charlotte’s Web eight months ago, and my son hasn't had a seizure since.
We don't take a day of it for granted. We know epilepsy has found its way around every other substance we’ve used to curtail it for a time, but we remain hopeful. He’s still on clobazam and trileptal, but someday we hope to follow in your footsteps and begin a very slow wean. Until then, we are just so grateful we are not in the surgery ward. We owe so much of the gift of this Time to you.
So this Thanksgiving, I give my deepest and most heartfelt thanks to you and Michael and to the biggest, most beautiful pathfinder of them all, dear, sweet, Calvin.
dear anonymous, I hope you saw my reply from so many years ago. hope your son is still doing well. christy
Deletedear anonymous,i hope you saw my comment below which i posted years ago. i just reread your comment above. how is your son doing? i hope all is well with you and yours. christy
Deletedear anonymous.
ReplyDeleteyou've made me weep uncontrollably. thank you. it feels so cleansing and i've felt the need to do more of it since my mother died.
i am so glad that your son is doing so well on the charlotte's web. we've thought of trying it for calvin but we are doing some other things first. i
'd love to know where you live and hear more about your story. if you want to, you can post another comment to this blog including your email and i won't publish it but i'll have your contact info.
thank you for this most wonderful thanksgiving gift of gratitude and love.
all my best, christy