My name is Michael and I am 21 years
old. I live in New York with my mom and
dad and our dog. I have two siblings
and a nephew who is 3 years old. I
also have a rare seizure disorder
called Lennox-Gastaut Syndrome.
It’s hard for me to write, so I’m having
my sister write this for me. She is being
very patient with me since I also have a
hard time gathering my thoughts, and
old. I live in New York with my mom and
dad and our dog. I have two siblings
and a nephew who is 3 years old. I
also have a rare seizure disorder
called Lennox-Gastaut Syndrome.
It’s hard for me to write, so I’m having
my sister write this for me. She is being
very patient with me since I also have a
hard time gathering my thoughts, and
it takes me a while to say what I want. This can be very frustrating sometimes,
especially when people who don’t understand what LGS is get annoyed with me. I'm not
able to talk as fast as everyone else.
I have had LGS for 16 years and epilepsy for 18 years. It’s been a very long, rough
road. My first seizure happened when I was 3 years old. My brother and sister, who
were only 7 and 9 years old at the time, thought I was having a heart-attack; they didn’t
know what happened to me! I went in the ambulance with my mom and the doctors ran
some tests on me. They said that I had a seizure, but didn’t tell me I had epilepsy. A few
weeks later I had another one, followed by another one shortly after that. We went back
to the hospital where the doctors told my mom I had epilepsy. I was forced to take some
pills to help control the seizures. The first medicine they gave me didn’t help much, so
they put me on a different kind. While I was on the second kind of medicine, I would
often drop to the ground and fall on my face. I would even have bruises on my body
from these falls. My mom told me that I had to wear a helmet. I was still cute though,
even with some bruises, black eyes, and a helmet on! And my family still loved me.
When I was five, I started kindergarten. At this time, I had been on a few different
medicines, but I still had seizures. I was in a smaller classroom than other kids my age;
the classroom had only 8 students and three teachers. It was called special education.
I liked school but had trouble learning. I was hyper, but since I was on so much
medication, I felt like a zombie. Go figure, a hyper zombie! My mom and dad kept taking
me to the hospital, especially after the times I would have 30-40 minute long seizures.
One day, they took me to Columbia Presbyterian hospital in Manhattan and we met a
very nice doctor who told my mom that I had Lennox-Gastaut Syndrome. This was after
my mom had already done some research of her own and found out about LGS. She
was very upset but also relieved that I finally had a diagnosis.
Over the years, I still had seizures... It was hard for me to wake up in the morning
because I was so tired. Then, the doctor put me on a really good medicine which made
me feel great! I actually had energy, and the seizures stopped for a few days! Then
one day, when my mom was drinking coffee and watching Good Morning America, the
news bar on the bottom read, “Anti-epileptic drug Felbamate recalled due to potential
fatality.” My mom’s mouth dropped to the floor and so did her coffee. I then had to
switch to another medicine.
The doctors kept doing tests over the years and we found out that I had constant
seizure activity in my brain at all times. I began to have new types of seizures. My mom
and dad were worried all of the time. She would cry and say she was frustrated with
medicine, doctors, and me being sick.
Then my mom was told about some device called the VNS which would go into my chest
and could help control my seizures! There was even hope that it would make the
seizures go away all together! I went in for surgery and they implanted the device.
Unfortunately, it did not work. The VNS stayed in my body but as I continued to grow,
the wires attached to my nerve bothered me and made me itch. My mom wanted to
have it removed but a lot of the doctors said that removing the wires was dangerous.
After seeing a few different doctors, we found one that was able to successfully remove
the VNS.
As I continued to get older, school became very hard for me. I was in a really big public
high school. I wasn’t able to go all that much because I was real tired and sometimes
didn’t wake up until the afternoon, especially if I had a lot of seizures the night before. I
couldn’t help this though. When I did go to school, I would get mad because the
teachers gave me work I couldn't understand. Since I was having so many seizures
every day, my speech slowed down and the teachers would think I was ignoring them
when they asked me a question. My mom was sad too because I was getting
suspended for behavior problems which were caused by having Lennox-Gastaut
syndrome and all of the seizures. It made me sad to go to school. While all of the other
kids my age were worrying about prom or buying their first car, I was worrying that I
would have another seizure.
When I got older, my mom found out about the Special Olympics and other adult
programs for people who had disabilities. I played on a softball team and a bowling
team and felt that these people understood me! They didn’t care that I was different,
because they were different too. They liked to hear me talk about random things. It
made sense to them. Recently, I was accepted in Mary Haven, a day program for adults
with disabilities. I am learning to do life skills. We go shopping on some days. On other
days, we cook lunch for ourselves. We talk and people listen to me. We do activities.
And I finally feel like I’m where I belong. I just hope it continues to be a good option for
me.
I continue to have a lot of seizures a day. I am still regressing. I am 20 years old but
have the reading level of a first grader. I take a lot of medicine. I am developing new
problems as I get older, and I was just put on an anti-psychotic drug on top of
everything else. I have some really, really bad days when I don’t want to be bothered
with anyone or do anything. I really don’t like when I have bad days.
But you know what? My family loves me. It doesn’t take much to put a smile on my face.
I’m just happy to have the things that so many other people don't realize they have.
And I really hope that one day there is a cure for LGS.
Sincerely,
Michael
(submitted by Michael's sister, Christina)
especially when people who don’t understand what LGS is get annoyed with me. I'm not
able to talk as fast as everyone else.
I have had LGS for 16 years and epilepsy for 18 years. It’s been a very long, rough
road. My first seizure happened when I was 3 years old. My brother and sister, who
were only 7 and 9 years old at the time, thought I was having a heart-attack; they didn’t
know what happened to me! I went in the ambulance with my mom and the doctors ran
some tests on me. They said that I had a seizure, but didn’t tell me I had epilepsy. A few
weeks later I had another one, followed by another one shortly after that. We went back
to the hospital where the doctors told my mom I had epilepsy. I was forced to take some
pills to help control the seizures. The first medicine they gave me didn’t help much, so
they put me on a different kind. While I was on the second kind of medicine, I would
often drop to the ground and fall on my face. I would even have bruises on my body
from these falls. My mom told me that I had to wear a helmet. I was still cute though,
even with some bruises, black eyes, and a helmet on! And my family still loved me.
When I was five, I started kindergarten. At this time, I had been on a few different
medicines, but I still had seizures. I was in a smaller classroom than other kids my age;
the classroom had only 8 students and three teachers. It was called special education.
I liked school but had trouble learning. I was hyper, but since I was on so much
medication, I felt like a zombie. Go figure, a hyper zombie! My mom and dad kept taking
me to the hospital, especially after the times I would have 30-40 minute long seizures.
One day, they took me to Columbia Presbyterian hospital in Manhattan and we met a
very nice doctor who told my mom that I had Lennox-Gastaut Syndrome. This was after
my mom had already done some research of her own and found out about LGS. She
was very upset but also relieved that I finally had a diagnosis.
Over the years, I still had seizures... It was hard for me to wake up in the morning
because I was so tired. Then, the doctor put me on a really good medicine which made
me feel great! I actually had energy, and the seizures stopped for a few days! Then
one day, when my mom was drinking coffee and watching Good Morning America, the
news bar on the bottom read, “Anti-epileptic drug Felbamate recalled due to potential
fatality.” My mom’s mouth dropped to the floor and so did her coffee. I then had to
switch to another medicine.
The doctors kept doing tests over the years and we found out that I had constant
seizure activity in my brain at all times. I began to have new types of seizures. My mom
and dad were worried all of the time. She would cry and say she was frustrated with
medicine, doctors, and me being sick.
Then my mom was told about some device called the VNS which would go into my chest
and could help control my seizures! There was even hope that it would make the
seizures go away all together! I went in for surgery and they implanted the device.
Unfortunately, it did not work. The VNS stayed in my body but as I continued to grow,
the wires attached to my nerve bothered me and made me itch. My mom wanted to
have it removed but a lot of the doctors said that removing the wires was dangerous.
After seeing a few different doctors, we found one that was able to successfully remove
the VNS.
As I continued to get older, school became very hard for me. I was in a really big public
high school. I wasn’t able to go all that much because I was real tired and sometimes
didn’t wake up until the afternoon, especially if I had a lot of seizures the night before. I
couldn’t help this though. When I did go to school, I would get mad because the
teachers gave me work I couldn't understand. Since I was having so many seizures
every day, my speech slowed down and the teachers would think I was ignoring them
when they asked me a question. My mom was sad too because I was getting
suspended for behavior problems which were caused by having Lennox-Gastaut
syndrome and all of the seizures. It made me sad to go to school. While all of the other
kids my age were worrying about prom or buying their first car, I was worrying that I
would have another seizure.
When I got older, my mom found out about the Special Olympics and other adult
programs for people who had disabilities. I played on a softball team and a bowling
team and felt that these people understood me! They didn’t care that I was different,
because they were different too. They liked to hear me talk about random things. It
made sense to them. Recently, I was accepted in Mary Haven, a day program for adults
with disabilities. I am learning to do life skills. We go shopping on some days. On other
days, we cook lunch for ourselves. We talk and people listen to me. We do activities.
And I finally feel like I’m where I belong. I just hope it continues to be a good option for
me.
I continue to have a lot of seizures a day. I am still regressing. I am 20 years old but
have the reading level of a first grader. I take a lot of medicine. I am developing new
problems as I get older, and I was just put on an anti-psychotic drug on top of
everything else. I have some really, really bad days when I don’t want to be bothered
with anyone or do anything. I really don’t like when I have bad days.
But you know what? My family loves me. It doesn’t take much to put a smile on my face.
I’m just happy to have the things that so many other people don't realize they have.
And I really hope that one day there is a cure for LGS.
Sincerely,
Michael
(submitted by Michael's sister, Christina)
