Hello, my name is Georgia. I have a beautiful 11 year
old boy named Steven, the picture here was taken this
year on his first day of 6th grade. He has LGS. Well, I
don't even know where to begin, so i will just start from
the beginning. Steven was born on July 12, 1997, by
C-Section due to the umbilical cord around his neck,
therefore lack of oxygen.
old boy named Steven, the picture here was taken this
year on his first day of 6th grade. He has LGS. Well, I
don't even know where to begin, so i will just start from
the beginning. Steven was born on July 12, 1997, by
C-Section due to the umbilical cord around his neck,
therefore lack of oxygen.
He was healthy, 5 fingers and toes, my little angel. I took him home in 2 days, and
began my journey as a first time mommy! On the second day home, he was really
lethargic, not wanting to eat, not crying..etc. I took him to the ER and his blood sugar
was at 2, which i am lucky I got him there when i did, because it was supposed to be at
least 40. He was admitted into the NICU at a hospital about an hour away and stayed
there for 3 weeks until his sugar could be controlled. When i brought him home, he
was fine, although i had to wake up every 3 hours to feed him and check his blood
sugar, but we never had a problem with it again. He saw metabolic specialists,
endocrinologists, and honestly i cant even tell you what they were looking for because
i just knew he was fine and i just went on with our lives. He also had a VSD, which is a
hole in his heart, but it has never been a problem, and it is too small to repair.
Anyways, i had my smart little guy, full of smiles, who loved teletubbies, and Barney
and he was perfect. He was a little delayed in talking, and all the baby milestones, but
i just figured it was normal. Luckily, as a single mom, i was blessed to have the help of
my mother there to help me until Steven was 8 months old, when she passed away. It
was devastating to me, and thank god i had Steven to make me get up every day.
About a few months later, Steven was a little over a year old, i was living with my dad
and i had just got Steven out of the bathtub. I lay him on the bed and i was putting his
baby lotion on him, i used to love the smell of my baby after a bath, when his fists kind
of clenched out and his eyes popped open wide. I tilted my head, not knowing what
he was doing, and just stared at him. He did it again, and i called my dad to come
look. Steven did it a couple more times and so we took him to the ER. I don't
remember all that they did that night, its is like a whirlwind...but i just remember the
doctor telling me he had a seizure and they started him on Phenobarbital. Well, i
didn't think a seizure was bad, big deal, it was just a seizure. I remember taking him to
the metabolic specialist and they referred me to a neurologist. Its sad to say, but i
cant even tell you how many seizures he had in that time period, or how frequently. I
just remember jumping into a world that i was not prepared to live in. I remember all
the medicines, lets try this, try that, increase this one, decrease that one. I just
wanted to know what was wrong with my son! I was so frustrated! I changed
neurologists. After the 4th neurologist, and i think 4 or 5 different meds, i was ready
to scream. I started searching on the Internet, and came across UCLA Ped.
Neurology. I emailed the first doctor i saw and begged for help. I don't even know
who the doctor was, but they answered me and led me to my sons current neurologist.
It was about an hour drive, but with traffic in L.A, it sometimes took 3 hours or more,
but on our 2nd visit, the neuro told me my son had LGS. I was holding back the tears.
I had no idea what LGS was, i thought he was going to die, and i flat out asked the
neuro if he was. She assured me that he wasn't going to die from LGS and went on to
explain the syndrome to me. Although i was still scared to death, i just went and
researched on the internet, and found out everything i could. I went through the
whole denial phase and did this up until just about 2 years ago. I thought, there is no
way he has the "full" LGS, he just has it partially, or not as bad as the rest of the kids.
My son could talk, walk, feed himself, go potty, no way he was going to maybe be in a
wheelchair, or regress, or be "mentally retarded". Not my son. When he was started
on the Keto diet a few years back, we just happened to be in the room with a girl who
was 15 who had LGS. She couldn't talk, walk, feed herself, and her parents said she
used to be a "normal" little girl. I again, said no way, but in the back of my mind i was
scared. Well, he was 4 when we got the LGS diagnosis, and he is almost 12 now. He
is mentally retarded and he is about at the age level of a 2-3 year old. We have tried i
don't even know how many medicines, all of them pretty much, including the VNS, the
keto diet twice, the LGIT, the Mod. Atkins diet...and actually he was scheduled for a
Corpus Colostomy tomorrow, but i decided to try the new drug Banzel and postponed
surgery for a month. So far, the Banzel was showing signs of helping, but he has had
4 grand mals, worse than usual in the last 2 days, but he has only been on it for a
week so we will just keep our fingers crossed. I am getting ahead of myself here. My
son went from spelling over 75 words in school, to now he can barely remember how
to spell cat. He used to watch his little videos, and now he barely will watch anything.
He has a wheelchair/stroller, because he cant walk for long periods of time. He wears
a protective helmet. He cant go out in the sun for long before the sun gets to him and
he has a seizure. The first time he had a Grand mal, i thought he was dead, that was
so scary. He has every type of seizures there is, and he has at least 2 a day, not
counting the absence ones...i couldn't count those if wanted to! I just have started
seeing the regression over the last 2 years. You cant have a conversation with him,
he just isn't there, he is in his own world. He does talk, but mostly about his favorite
movie "finding Nemo". He likes to go up to walls and "talk" to them, and stare at them
until he has a seizure. He doesn't interact with the kids in his class, let alone kids in
general. He cant read, or write, or color a picture in the lines. I am slowly starting to
see the LGS take over. Somedays, i just want to cry, I go back and wonder what i
could have done in pregnancy to prevent his, i question if the doctors did something
wrong when he was delivered, i look for answers, even though i know there are none.
It is so hard, LGS, the behavior that goes with it, just everything. My son can be so
mean to me sometimes, so aggressive and angry, and then i get upset and just have
to go in a different room and gather myself. I have to think of what he must be going
through. I know somewhere in there, there is an 11 year old boy, who wants to just go
outside and play by himself, to ride a bike and not have an adult with him constantly.
It breaks my heart. I have had to grow up so much, i was 23 when I had my son, and
he has really taught me so much. I have had to fight for so many things for him, from
care for him in my home, to the schools, to social security. They seem to think that
having epilepsy isn't a disabling condition, and when you try to explain that LGS is so
much more than just seizures, people just don't get it. I literally had to have a judge
come to my house to meet Steven after i appealed a decision for services in my home
so i could stay with him and get paid to do so. So many people don't know about this
syndrome, even his current teacher. When he started the school, she said "oh, we've
had lots of kids with epilepsy, he will be just fine" I tried to explain that it was LGS, and
she just brushed it off. Well, now in the 2nd year in her class and after fighting the
school district, my son now has a one on one aid, and the teacher will not allow him to
be alone for a second, ya, she learned about LGS real quick!! She often asks me
what i am going to do when he gets bigger than me, if i am going to put him in a home.
I have really thought about this, but even though i get scared that he could really hurt
me when he gets violent, i don't think i could ever leave him. He is my angel. There is
a special bond between us that people just don't understand. When he is sleeping at
night, so peacefully, sometimes even laughing or smiling in his sleep....there is my
boy...he is there...those are the moments that i know he is just a little boy with this
horrible syndrome and he is my blessing, and my baby. I am so thankful for him, just
the way he is, I don't have any other children, and honestly i wouldn't know what to do
with a "normal" child! My son is happy with the simplest of things. A roll of tape to tear
apart...a bottle of shaving cream to get his hands messy, just the simplest of things.
He is loving when he wants to be, and I know he loves me. He talks a lot about
heaven, and he can tell you anything you want to know about it. Weird, he cant read
or write, but he can tell you about heaven! He has changed my life forever, and he is
my precious angel, and i even though i get frustrated some days, i wouldn't trade him
for the world. I am sorry that this is so long, but i really wanted to share my story on a
personal level, so others could know that they are not alone, and it feels good to write
this all down, to get it all out. My life now is just waking up every morning and thanking
god that i have another day with my son, and waiting to see his little smile, and
watching him go off to school on the school bus. I love him more than anything in this
world, and i am not going to let LGS win, I will persevere, and do all that i can do to
make sure that my little boy is happy and living his life to the fullest!
began my journey as a first time mommy! On the second day home, he was really
lethargic, not wanting to eat, not crying..etc. I took him to the ER and his blood sugar
was at 2, which i am lucky I got him there when i did, because it was supposed to be at
least 40. He was admitted into the NICU at a hospital about an hour away and stayed
there for 3 weeks until his sugar could be controlled. When i brought him home, he
was fine, although i had to wake up every 3 hours to feed him and check his blood
sugar, but we never had a problem with it again. He saw metabolic specialists,
endocrinologists, and honestly i cant even tell you what they were looking for because
i just knew he was fine and i just went on with our lives. He also had a VSD, which is a
hole in his heart, but it has never been a problem, and it is too small to repair.
Anyways, i had my smart little guy, full of smiles, who loved teletubbies, and Barney
and he was perfect. He was a little delayed in talking, and all the baby milestones, but
i just figured it was normal. Luckily, as a single mom, i was blessed to have the help of
my mother there to help me until Steven was 8 months old, when she passed away. It
was devastating to me, and thank god i had Steven to make me get up every day.
About a few months later, Steven was a little over a year old, i was living with my dad
and i had just got Steven out of the bathtub. I lay him on the bed and i was putting his
baby lotion on him, i used to love the smell of my baby after a bath, when his fists kind
of clenched out and his eyes popped open wide. I tilted my head, not knowing what
he was doing, and just stared at him. He did it again, and i called my dad to come
look. Steven did it a couple more times and so we took him to the ER. I don't
remember all that they did that night, its is like a whirlwind...but i just remember the
doctor telling me he had a seizure and they started him on Phenobarbital. Well, i
didn't think a seizure was bad, big deal, it was just a seizure. I remember taking him to
the metabolic specialist and they referred me to a neurologist. Its sad to say, but i
cant even tell you how many seizures he had in that time period, or how frequently. I
just remember jumping into a world that i was not prepared to live in. I remember all
the medicines, lets try this, try that, increase this one, decrease that one. I just
wanted to know what was wrong with my son! I was so frustrated! I changed
neurologists. After the 4th neurologist, and i think 4 or 5 different meds, i was ready
to scream. I started searching on the Internet, and came across UCLA Ped.
Neurology. I emailed the first doctor i saw and begged for help. I don't even know
who the doctor was, but they answered me and led me to my sons current neurologist.
It was about an hour drive, but with traffic in L.A, it sometimes took 3 hours or more,
but on our 2nd visit, the neuro told me my son had LGS. I was holding back the tears.
I had no idea what LGS was, i thought he was going to die, and i flat out asked the
neuro if he was. She assured me that he wasn't going to die from LGS and went on to
explain the syndrome to me. Although i was still scared to death, i just went and
researched on the internet, and found out everything i could. I went through the
whole denial phase and did this up until just about 2 years ago. I thought, there is no
way he has the "full" LGS, he just has it partially, or not as bad as the rest of the kids.
My son could talk, walk, feed himself, go potty, no way he was going to maybe be in a
wheelchair, or regress, or be "mentally retarded". Not my son. When he was started
on the Keto diet a few years back, we just happened to be in the room with a girl who
was 15 who had LGS. She couldn't talk, walk, feed herself, and her parents said she
used to be a "normal" little girl. I again, said no way, but in the back of my mind i was
scared. Well, he was 4 when we got the LGS diagnosis, and he is almost 12 now. He
is mentally retarded and he is about at the age level of a 2-3 year old. We have tried i
don't even know how many medicines, all of them pretty much, including the VNS, the
keto diet twice, the LGIT, the Mod. Atkins diet...and actually he was scheduled for a
Corpus Colostomy tomorrow, but i decided to try the new drug Banzel and postponed
surgery for a month. So far, the Banzel was showing signs of helping, but he has had
4 grand mals, worse than usual in the last 2 days, but he has only been on it for a
week so we will just keep our fingers crossed. I am getting ahead of myself here. My
son went from spelling over 75 words in school, to now he can barely remember how
to spell cat. He used to watch his little videos, and now he barely will watch anything.
He has a wheelchair/stroller, because he cant walk for long periods of time. He wears
a protective helmet. He cant go out in the sun for long before the sun gets to him and
he has a seizure. The first time he had a Grand mal, i thought he was dead, that was
so scary. He has every type of seizures there is, and he has at least 2 a day, not
counting the absence ones...i couldn't count those if wanted to! I just have started
seeing the regression over the last 2 years. You cant have a conversation with him,
he just isn't there, he is in his own world. He does talk, but mostly about his favorite
movie "finding Nemo". He likes to go up to walls and "talk" to them, and stare at them
until he has a seizure. He doesn't interact with the kids in his class, let alone kids in
general. He cant read, or write, or color a picture in the lines. I am slowly starting to
see the LGS take over. Somedays, i just want to cry, I go back and wonder what i
could have done in pregnancy to prevent his, i question if the doctors did something
wrong when he was delivered, i look for answers, even though i know there are none.
It is so hard, LGS, the behavior that goes with it, just everything. My son can be so
mean to me sometimes, so aggressive and angry, and then i get upset and just have
to go in a different room and gather myself. I have to think of what he must be going
through. I know somewhere in there, there is an 11 year old boy, who wants to just go
outside and play by himself, to ride a bike and not have an adult with him constantly.
It breaks my heart. I have had to grow up so much, i was 23 when I had my son, and
he has really taught me so much. I have had to fight for so many things for him, from
care for him in my home, to the schools, to social security. They seem to think that
having epilepsy isn't a disabling condition, and when you try to explain that LGS is so
much more than just seizures, people just don't get it. I literally had to have a judge
come to my house to meet Steven after i appealed a decision for services in my home
so i could stay with him and get paid to do so. So many people don't know about this
syndrome, even his current teacher. When he started the school, she said "oh, we've
had lots of kids with epilepsy, he will be just fine" I tried to explain that it was LGS, and
she just brushed it off. Well, now in the 2nd year in her class and after fighting the
school district, my son now has a one on one aid, and the teacher will not allow him to
be alone for a second, ya, she learned about LGS real quick!! She often asks me
what i am going to do when he gets bigger than me, if i am going to put him in a home.
I have really thought about this, but even though i get scared that he could really hurt
me when he gets violent, i don't think i could ever leave him. He is my angel. There is
a special bond between us that people just don't understand. When he is sleeping at
night, so peacefully, sometimes even laughing or smiling in his sleep....there is my
boy...he is there...those are the moments that i know he is just a little boy with this
horrible syndrome and he is my blessing, and my baby. I am so thankful for him, just
the way he is, I don't have any other children, and honestly i wouldn't know what to do
with a "normal" child! My son is happy with the simplest of things. A roll of tape to tear
apart...a bottle of shaving cream to get his hands messy, just the simplest of things.
He is loving when he wants to be, and I know he loves me. He talks a lot about
heaven, and he can tell you anything you want to know about it. Weird, he cant read
or write, but he can tell you about heaven! He has changed my life forever, and he is
my precious angel, and i even though i get frustrated some days, i wouldn't trade him
for the world. I am sorry that this is so long, but i really wanted to share my story on a
personal level, so others could know that they are not alone, and it feels good to write
this all down, to get it all out. My life now is just waking up every morning and thanking
god that i have another day with my son, and waiting to see his little smile, and
watching him go off to school on the school bus. I love him more than anything in this
world, and i am not going to let LGS win, I will persevere, and do all that i can do to
make sure that my little boy is happy and living his life to the fullest!
