Hello, let me start by introducing you to Natasha, only if you
meet her, call her Tasha. She hates Natasha. Makes her sound old she
says. Tasha is 15 years old now. She was born on New
Years day with a horse-shoe birthmark on her side. My lucky baby. Apgar
score of 9. Absolutely perfect, a beautiful smile that lit up the room.
meet her, call her Tasha. She hates Natasha. Makes her sound old she
says. Tasha is 15 years old now. She was born on New
Years day with a horse-shoe birthmark on her side. My lucky baby. Apgar
score of 9. Absolutely perfect, a beautiful smile that lit up the room.
Tasha came home with me the next day and for 3 1/2 years life went on as
planned. She was a happy, lovable child who reached all of her
developmental milestones on time and most ahead of schedule. She walked
at 9 months, cut teeth at 3 months, was babbling and trying to talk at
an early age. At 3 years old she was tested on a 6 year old vocabulary
level. She knew her alphabet, could count to 100, could read
kindergarten level books and could write her name and address.
Around September of 97, which would make her 3 years and 8
months old she went in for a well child check up and received her MMR
vaccine and Chickenpox vaccine. There were no side effects out of the
ordinary. A slight fever and fussiness for a few hours was the extent
of it. A week before Halloween; not quite a month later, she had her
first seizure. Hospital told us it was a febrile seizure and put her
through all sorts of tests including sonograms, x-rays, an IVP to check
the flow of urine through her ureters, kidneys and bladder. They found
nothing. No cause for the fever they said she had. Although I never
noticed a fever. We were sent home with tylenol and nothing else.
Halloween night a week later she had another, these were small at first
just noises she would make, eyes would roll back and she couldn't
respond to you. Only lasted for a few mins. Then they were gone, never
lost consciousness or fell. After the second trip to the ER, they gave
her a Dx of Epilepsy. I was devastated at first as I am sure all parents
are when they here something like this. But I soon stopped crying and
feeling sorry for myself and my daughter and said, "Ok, what's next?
What do we have to do to fix this. Let's get it started."
At 5 she was Dx with Lennox-Gastaut Syndrome. As a mother I was
devastated. I thought what now, what does it all mean? So I went home
and did the research. Called her pediatrician, asked about the vaccines,
about her diagnosis. I asked so many questions, and got under a lot of
people's skin. From what I have learned and been told by her
pediatrician and neurologist, the MMR vaccine (Primarily the measles
part of the MMR vaccine) caused SSPE, Sub-acute Sclerotic Pan
Encephalitis, which caused the LGS. I was mad as hell. A vaccine meant
to protect my child had done this. How could this be? Why? And again I
asked, How do we fix it?
Tasha was a great kid through it all. She never complained. She
fussed a little from time to time, but she took everything in stride. I
have learned so much about patience and strength from this little girl.
Through all the different medicines, the awful side effects, the weekly
and monthly visits to labs for blood level monitoring, to the
neurologists for medicine changes and EEG's. and countless trips to the
ER for stitches, broken bones, and IV meds to get her out of a seizure
when she would go status. Tasha developed multiple seizure types,
tonic-clonic, atonic, petit-mal, complex partial, and absence seizures.
These were all the time. Through the years she wore a helmet, had to
have a special chair made for her so she could be safe. She was unable
to continue going to public school and was home schooled by me for a
number of years. Her cognitive and functioning skills diminished. She
was unable to feed herself, dress herself, and lost control of her
bladder completely. She lost the ability to read and write. Between the
seizures and the multiple meds she was on, she was like a zombie. She
looked at you with a blank stare. The light and life that shined in her
eyes was the only part of my little girl that remained the same, that
and her smile, when she could muster it.
When Tasha was 7 she had the VNS stimulator implanted. It helped
a lot with the length and recovery time from the tonic-clonics, but the
others were unaffected and were often. I estimate she was actually alert
and with us for 2 hours out of a 12-14 hour day. She lost so much weight
we gave her pediasure and anything fattening like ice cream and junk
food to put weight on her. She lost approximately 40-50 pounds over a 2
year span. It was a hard time for us. Trying to raise and spend time
with her younger sister, work and support the family, and keep up with
Dr. appointments, medicine regiments, and her school work. I look back
on it and still don't know how we got through. But we just kept going,
smiling, loving, and enjoying the time we had together. We had resolved
ourselves to the fact that this was how it was going to be.
When Tasha was 10 her neurologist put her on a new medicine. He
said it may not work, well duh, none of them had. But we tried it. We
always researched it a little, looked at the side effects and weighed it
against the seizures she was having, but you try it anyway, each new
medicine holds that smallest glimmer of hope that parents hold onto. So
she was started on Lamictal, slowly at first, due to it's number one
side effect, a skin peeling rash. Two days later my baby, my daughter of
10 years that I saw go from perfect to almost comatose, stopped having
seizures. Just stopped, nothing, none at all. We couldn't believe it. It
was our miracle. There's a part of me that believes it wasn't just the
Lamictal. God's hand and will was in there somewhere. I know it, I felt
it. You don't go from being on 18 pills a day, having 80-90 seizures a
day to having no seizures and tapering off the medication. I understand
the medicine may not work for all, and may not have worked for her at an
earlier time. The neurologist said it was the right drug at the right
time. Whatever they want to call it, it was our miracle. Tasha had two
breakthrough seizures in Jan of 06, her stimulator was adjusted, and has
had none since. She has been coming off seizure meds for a few years
now. She went from 18 pills a day to 2-1/2. She's on Clonanzepam 0.5 and
Lamictal 300 mg.
As I stated she's 15 years old now. We've had to learn everything
all over again. Reading, writing, adding, subtracting...the basics. We
had to start from scratch, but we don't mind. It's great. My smiling,
vibrant, life loving little girl is back, just in a bigger package. I
don't even mind the teenage attitude. Our story is on going, we don't
know for how long the seizures will stay under control, or if they will
ever come back. The mother in me wants to believe they are gone for
good, but the nurse in me knows that the chance that she will have
another seizure is real, and only a heartbeat away. But we'll keep going
and pushing through. She is my heart. She has taught me about personal
strength and to be grateful for what you have, cause one day it may be
gone. They say God only gives you what he thinks you can handle, I guess
he knew me better than I knew myself. Every minute with her is a
blessing and another day of the journey.
Submitted by Tasha's mom, Helen
planned. She was a happy, lovable child who reached all of her
developmental milestones on time and most ahead of schedule. She walked
at 9 months, cut teeth at 3 months, was babbling and trying to talk at
an early age. At 3 years old she was tested on a 6 year old vocabulary
level. She knew her alphabet, could count to 100, could read
kindergarten level books and could write her name and address.
Around September of 97, which would make her 3 years and 8
months old she went in for a well child check up and received her MMR
vaccine and Chickenpox vaccine. There were no side effects out of the
ordinary. A slight fever and fussiness for a few hours was the extent
of it. A week before Halloween; not quite a month later, she had her
first seizure. Hospital told us it was a febrile seizure and put her
through all sorts of tests including sonograms, x-rays, an IVP to check
the flow of urine through her ureters, kidneys and bladder. They found
nothing. No cause for the fever they said she had. Although I never
noticed a fever. We were sent home with tylenol and nothing else.
Halloween night a week later she had another, these were small at first
just noises she would make, eyes would roll back and she couldn't
respond to you. Only lasted for a few mins. Then they were gone, never
lost consciousness or fell. After the second trip to the ER, they gave
her a Dx of Epilepsy. I was devastated at first as I am sure all parents
are when they here something like this. But I soon stopped crying and
feeling sorry for myself and my daughter and said, "Ok, what's next?
What do we have to do to fix this. Let's get it started."
At 5 she was Dx with Lennox-Gastaut Syndrome. As a mother I was
devastated. I thought what now, what does it all mean? So I went home
and did the research. Called her pediatrician, asked about the vaccines,
about her diagnosis. I asked so many questions, and got under a lot of
people's skin. From what I have learned and been told by her
pediatrician and neurologist, the MMR vaccine (Primarily the measles
part of the MMR vaccine) caused SSPE, Sub-acute Sclerotic Pan
Encephalitis, which caused the LGS. I was mad as hell. A vaccine meant
to protect my child had done this. How could this be? Why? And again I
asked, How do we fix it?
Tasha was a great kid through it all. She never complained. She
fussed a little from time to time, but she took everything in stride. I
have learned so much about patience and strength from this little girl.
Through all the different medicines, the awful side effects, the weekly
and monthly visits to labs for blood level monitoring, to the
neurologists for medicine changes and EEG's. and countless trips to the
ER for stitches, broken bones, and IV meds to get her out of a seizure
when she would go status. Tasha developed multiple seizure types,
tonic-clonic, atonic, petit-mal, complex partial, and absence seizures.
These were all the time. Through the years she wore a helmet, had to
have a special chair made for her so she could be safe. She was unable
to continue going to public school and was home schooled by me for a
number of years. Her cognitive and functioning skills diminished. She
was unable to feed herself, dress herself, and lost control of her
bladder completely. She lost the ability to read and write. Between the
seizures and the multiple meds she was on, she was like a zombie. She
looked at you with a blank stare. The light and life that shined in her
eyes was the only part of my little girl that remained the same, that
and her smile, when she could muster it.
When Tasha was 7 she had the VNS stimulator implanted. It helped
a lot with the length and recovery time from the tonic-clonics, but the
others were unaffected and were often. I estimate she was actually alert
and with us for 2 hours out of a 12-14 hour day. She lost so much weight
we gave her pediasure and anything fattening like ice cream and junk
food to put weight on her. She lost approximately 40-50 pounds over a 2
year span. It was a hard time for us. Trying to raise and spend time
with her younger sister, work and support the family, and keep up with
Dr. appointments, medicine regiments, and her school work. I look back
on it and still don't know how we got through. But we just kept going,
smiling, loving, and enjoying the time we had together. We had resolved
ourselves to the fact that this was how it was going to be.
When Tasha was 10 her neurologist put her on a new medicine. He
said it may not work, well duh, none of them had. But we tried it. We
always researched it a little, looked at the side effects and weighed it
against the seizures she was having, but you try it anyway, each new
medicine holds that smallest glimmer of hope that parents hold onto. So
she was started on Lamictal, slowly at first, due to it's number one
side effect, a skin peeling rash. Two days later my baby, my daughter of
10 years that I saw go from perfect to almost comatose, stopped having
seizures. Just stopped, nothing, none at all. We couldn't believe it. It
was our miracle. There's a part of me that believes it wasn't just the
Lamictal. God's hand and will was in there somewhere. I know it, I felt
it. You don't go from being on 18 pills a day, having 80-90 seizures a
day to having no seizures and tapering off the medication. I understand
the medicine may not work for all, and may not have worked for her at an
earlier time. The neurologist said it was the right drug at the right
time. Whatever they want to call it, it was our miracle. Tasha had two
breakthrough seizures in Jan of 06, her stimulator was adjusted, and has
had none since. She has been coming off seizure meds for a few years
now. She went from 18 pills a day to 2-1/2. She's on Clonanzepam 0.5 and
Lamictal 300 mg.
As I stated she's 15 years old now. We've had to learn everything
all over again. Reading, writing, adding, subtracting...the basics. We
had to start from scratch, but we don't mind. It's great. My smiling,
vibrant, life loving little girl is back, just in a bigger package. I
don't even mind the teenage attitude. Our story is on going, we don't
know for how long the seizures will stay under control, or if they will
ever come back. The mother in me wants to believe they are gone for
good, but the nurse in me knows that the chance that she will have
another seizure is real, and only a heartbeat away. But we'll keep going
and pushing through. She is my heart. She has taught me about personal
strength and to be grateful for what you have, cause one day it may be
gone. They say God only gives you what he thinks you can handle, I guess
he knew me better than I knew myself. Every minute with her is a
blessing and another day of the journey.
Submitted by Tasha's mom, Helen
