It was 4 years ago to the day that Charlie, then 2, suffered his first
seizure. He was a normal, healthy child. He hit all of his mile
stones, and was thriving. With in 30 days of his first tonic clonic
seizure, he was having over 150 seizures a day. The drop seizures
were the worst, causing facial injuries and cuts and bruises.
Charlie had regressed to being infant like, and basically seizing all
night and most of the day. Through an absolute miracle we were
able to get Charlie in to Dr Frank Ritter at the Minnesota Epilepsy
seizure. He was a normal, healthy child. He hit all of his mile
stones, and was thriving. With in 30 days of his first tonic clonic
seizure, he was having over 150 seizures a day. The drop seizures
were the worst, causing facial injuries and cuts and bruises.
Charlie had regressed to being infant like, and basically seizing all
night and most of the day. Through an absolute miracle we were
able to get Charlie in to Dr Frank Ritter at the Minnesota Epilepsy
Clinic, connected to United Hospital in St Paul. We were given the diagnosis of LGS
after only 48 hours of round the clock observation. We were devastated to say the
least, but we felt like Charlie was not the classic LGS case, as we knew it. He had
clear MRI's and nothing notable on the brain. He didn't have any other disabilities.
With a white seizure helmet on my baby, I drove back to Nebraska and made it my
mission to have Charlie be the 4% of LGS patients to be seizure and disability free. I
never dreamed we would be medication free! Charlie left the hospital on Felbatol,
Topamax, Klonoprin, depakote, and Carnitor (sp?). I went home to a full time
Respite Care Nurse, and a team of family members who worked with Charlie to
regain the speech, balance, and personality he had lost due to the seizures. Charlie
had a clear EEG, 6 and 12 months after his diagnosis. I had begun to feel the side
effects of the meds were intolerable. I felt that Charlie's loss of cognitive skills, fine
and gross motor skills, his inability to sleep, concentrate, sit still, and his lack of
appetite, were far worse than the seizures. I made a decision to begin to wean
Charlie off some of his meds (the dr's agreed to some but not all of them:) ). Little
by little over the next 3 months, I took Charlie off all of his meds, and little, by little,
the Charlie I knew began to reappear. Don't get me wrong, we still had a lot to catch
up on. Charlie did PT and OT almost daily. I brought in therapists, and worked
diligently to catch Charlie up to the appropriate age level. Charlie went from not
recognizing his letters, much less being able to write them over a year ago, to being
able to read most recently. He still works with an OT in the public schools, simply
because he qualifies due to his diagnosis. He is a normal child, in a normal setting.
His gross and fine motor skills are still needing a bit of attention. Charlie is thriving
and has been seizure and medication free for almost 3 years. His doctors call him a
miracle and so do we.
after only 48 hours of round the clock observation. We were devastated to say the
least, but we felt like Charlie was not the classic LGS case, as we knew it. He had
clear MRI's and nothing notable on the brain. He didn't have any other disabilities.
With a white seizure helmet on my baby, I drove back to Nebraska and made it my
mission to have Charlie be the 4% of LGS patients to be seizure and disability free. I
never dreamed we would be medication free! Charlie left the hospital on Felbatol,
Topamax, Klonoprin, depakote, and Carnitor (sp?). I went home to a full time
Respite Care Nurse, and a team of family members who worked with Charlie to
regain the speech, balance, and personality he had lost due to the seizures. Charlie
had a clear EEG, 6 and 12 months after his diagnosis. I had begun to feel the side
effects of the meds were intolerable. I felt that Charlie's loss of cognitive skills, fine
and gross motor skills, his inability to sleep, concentrate, sit still, and his lack of
appetite, were far worse than the seizures. I made a decision to begin to wean
Charlie off some of his meds (the dr's agreed to some but not all of them:) ). Little
by little over the next 3 months, I took Charlie off all of his meds, and little, by little,
the Charlie I knew began to reappear. Don't get me wrong, we still had a lot to catch
up on. Charlie did PT and OT almost daily. I brought in therapists, and worked
diligently to catch Charlie up to the appropriate age level. Charlie went from not
recognizing his letters, much less being able to write them over a year ago, to being
able to read most recently. He still works with an OT in the public schools, simply
because he qualifies due to his diagnosis. He is a normal child, in a normal setting.
His gross and fine motor skills are still needing a bit of attention. Charlie is thriving
and has been seizure and medication free for almost 3 years. His doctors call him a
miracle and so do we.