We have tried Dilantin, Lamictal, the Ketogenic Diet, Klonopin and others that I
cannot remember--they worked for a little while (probably because he was so
sedated) and then they didn't. We even had a corpus callosotomy performed when
he was four years old. It worked for one month. I realize I may sound without hope.
Perhaps I lack hope for a cure having tried so many drugs and watched my child
suffer the effects, but I have the highest hope for his happiness and quality of life.
During our journey, I have learned the most important thing you can do is to balance
quality of life with seizure control. This is why I gave up the Ketogenic diet. My baby
was starving and grumpy! The corpus callosotomy cost him his peripheral vision on
the chance that it would prevent the seizures from "crossing over" to the healthy side
of his brain. As I said, one month later, after a beautiful seizure-free time, I heard him
hit the floor behind me while card-shopping in Hallmark. My heart hit the floor with
him. We all wish for the same outcome for our children, healthly seizure-free lives. We
will do anything and we SHOULD try!! But, what we must foremost recognize, is that
this journey is a challenge, for all of us--the child and his or her family to endure,
love, and rise above the condition--making the most of whatever we get from it. What
each family receives may be the envy of other families. My son never learned to
speak! I WISH he could TELL ME what he wants, feels, enjoys! Others of you may
wish your child could run like he used to could, but you eventually learn to celebrate
and to pray for your child's continued ability to even stand up. As your journey
progresses and you begin to accept your path, your frustrations become fewer and
the sweet moments, the very subtle, tiny little joys that trickle into your lives become
monumental pleasures worthy of your celebration--despite constant seizures. It was at
the moment I watched my son wheeled away to brain surgery that I said, "IF, IF I can
just get him back--please let me have him back, I promise, promise I will stop trying to
"CURE" him and start celebrating every precious day he is in the world for however
long that may be. The journey is difficult--our young family grew apart in our
struggles, and when we split, my son stayed with his father and our daughter went
with me. Duncan is now a whole head taller than me and is completely dependent for
care. Though mobile, he is incontinent, spoon-fed, and has the cognitive abilities of
maybe, a two-year old. I wish everyday that I could have both of them as a single
parent, but there would be little left of me as a human, let alone as a mom. I am
compelled, as my daughter becomes older and more independent (9 yrs old) to find a
way to better balance our situation and to have more time with Duncan--more time to
explore his joys.
You discover through your challenges how worthwhile they are because the love that
grows and is constant in your shared struggle serves every area of your life, and for
me, has made me a much more loving and spiritual woman. I celebrate the small
things--ONE FULL HOUR on a soft, flat football field where Duncan wanders
free--free of drop-seizures and grasping hands to keep him upright and control his
movements, the sun on his cheeks, his face rosey from the exercise, his body tired
from the exertion--we're happy. A warm, summer morning in the neighborhood pool
before everyone arrives, where he can squeal, splash, wander and gaze up at the
trees freely, we're happy! Offering my child his basic "free-will" to choose what gives
him joy requires such monumental, but worthwhile, effort. I, too, believe in
miracles--but the miracles I wish for are the ones where our children will be FREE in a
SAFE environment designed JUST for them. They will enjoy soft floors, padded walls,
calming music, lots of sunshine outside on their own sandy "beach", fresh food, water
play and the presence of others like them who share the same challenges. My
journey with my child has opened me to the possibility that their time with us serves a
special purpose, a higher purpose. I have come to believe that my child, though
outwardly limited, may have other abilities that I cannot even grasp or comprehend
and that through these abilities, he connects with others who are like him (read "The
Children of Now" by Meg Blackburn Losey, PhD). His frustrations may be over my
inability to understand him and it will truly be a miracle when I finally make the
connection. It is now my goal, my life-desire to offer to him, peace and joy in a place
where he can relax, release his frustrations and embark on the inner journey, even
he, with all of his lifelong limitations has come to earth to experience for however long
he is intended to be here. I wish to be his guide--and in doing so, helping him in love,
I benefit as his pupil. I wonder how many of you out there have come to a very similar
place? Please connect: raven_curlylocks@yahoo.com With love to ALL of you.
cannot remember--they worked for a little while (probably because he was so
sedated) and then they didn't. We even had a corpus callosotomy performed when
he was four years old. It worked for one month. I realize I may sound without hope.
Perhaps I lack hope for a cure having tried so many drugs and watched my child
suffer the effects, but I have the highest hope for his happiness and quality of life.
During our journey, I have learned the most important thing you can do is to balance
quality of life with seizure control. This is why I gave up the Ketogenic diet. My baby
was starving and grumpy! The corpus callosotomy cost him his peripheral vision on
the chance that it would prevent the seizures from "crossing over" to the healthy side
of his brain. As I said, one month later, after a beautiful seizure-free time, I heard him
hit the floor behind me while card-shopping in Hallmark. My heart hit the floor with
him. We all wish for the same outcome for our children, healthly seizure-free lives. We
will do anything and we SHOULD try!! But, what we must foremost recognize, is that
this journey is a challenge, for all of us--the child and his or her family to endure,
love, and rise above the condition--making the most of whatever we get from it. What
each family receives may be the envy of other families. My son never learned to
speak! I WISH he could TELL ME what he wants, feels, enjoys! Others of you may
wish your child could run like he used to could, but you eventually learn to celebrate
and to pray for your child's continued ability to even stand up. As your journey
progresses and you begin to accept your path, your frustrations become fewer and
the sweet moments, the very subtle, tiny little joys that trickle into your lives become
monumental pleasures worthy of your celebration--despite constant seizures. It was at
the moment I watched my son wheeled away to brain surgery that I said, "IF, IF I can
just get him back--please let me have him back, I promise, promise I will stop trying to
"CURE" him and start celebrating every precious day he is in the world for however
long that may be. The journey is difficult--our young family grew apart in our
struggles, and when we split, my son stayed with his father and our daughter went
with me. Duncan is now a whole head taller than me and is completely dependent for
care. Though mobile, he is incontinent, spoon-fed, and has the cognitive abilities of
maybe, a two-year old. I wish everyday that I could have both of them as a single
parent, but there would be little left of me as a human, let alone as a mom. I am
compelled, as my daughter becomes older and more independent (9 yrs old) to find a
way to better balance our situation and to have more time with Duncan--more time to
explore his joys.
You discover through your challenges how worthwhile they are because the love that
grows and is constant in your shared struggle serves every area of your life, and for
me, has made me a much more loving and spiritual woman. I celebrate the small
things--ONE FULL HOUR on a soft, flat football field where Duncan wanders
free--free of drop-seizures and grasping hands to keep him upright and control his
movements, the sun on his cheeks, his face rosey from the exercise, his body tired
from the exertion--we're happy. A warm, summer morning in the neighborhood pool
before everyone arrives, where he can squeal, splash, wander and gaze up at the
trees freely, we're happy! Offering my child his basic "free-will" to choose what gives
him joy requires such monumental, but worthwhile, effort. I, too, believe in
miracles--but the miracles I wish for are the ones where our children will be FREE in a
SAFE environment designed JUST for them. They will enjoy soft floors, padded walls,
calming music, lots of sunshine outside on their own sandy "beach", fresh food, water
play and the presence of others like them who share the same challenges. My
journey with my child has opened me to the possibility that their time with us serves a
special purpose, a higher purpose. I have come to believe that my child, though
outwardly limited, may have other abilities that I cannot even grasp or comprehend
and that through these abilities, he connects with others who are like him (read "The
Children of Now" by Meg Blackburn Losey, PhD). His frustrations may be over my
inability to understand him and it will truly be a miracle when I finally make the
connection. It is now my goal, my life-desire to offer to him, peace and joy in a place
where he can relax, release his frustrations and embark on the inner journey, even
he, with all of his lifelong limitations has come to earth to experience for however long
he is intended to be here. I wish to be his guide--and in doing so, helping him in love,
I benefit as his pupil. I wonder how many of you out there have come to a very similar
place? Please connect: raven_curlylocks@yahoo.com With love to ALL of you.
I am the mom of a 15 1/2 year-old boy,
Duncan--"dark-haired warrior,"(Celtic; the meaning of his
name) who has been living with LGS for all but nine
months of his life. I found this website only last evening
when I explored the new med, Banzel that our doctor
wishes to try. Duncan takes Keppra and Depakote and his
seizures, especially the drop-seizures, remain uncontrolled.
Duncan--"dark-haired warrior,"(Celtic; the meaning of his
name) who has been living with LGS for all but nine
months of his life. I found this website only last evening
when I explored the new med, Banzel that our doctor
wishes to try. Duncan takes Keppra and Depakote and his
seizures, especially the drop-seizures, remain uncontrolled.
