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About LGS
Community Forum
Treatments
Donate
Resources
Media
Events
Stories
About Us
My son Zach…God’s blessing to me. Zach was
born Mother’s Day, May 13, 1990, weighing 9lbs
13 oz and 23” long. Taken c-section one month
after my original due date and after 5 days of
induction, Zach was re-hospitalized 3 days after he
was discharged from the hospital due to jaundice,
not eating and lethargy. The day of our re-admit,
a nurse came up to our room and said “I knew you’
d be back”. Apparently they were feeding him via
NG tube in the nursery and no one told us. We
thought it was me as a new mom and he was just a
born Mother’s Day, May 13, 1990, weighing 9lbs
13 oz and 23” long. Taken c-section one month
after my original due date and after 5 days of
induction, Zach was re-hospitalized 3 days after he
was discharged from the hospital due to jaundice,
not eating and lethargy. The day of our re-admit,
a nurse came up to our room and said “I knew you’
d be back”. Apparently they were feeding him via
NG tube in the nursery and no one told us. We
thought it was me as a new mom and he was just a
big “lazy” baby. During the next week he went through a spinal tap, numerous blood tests,
etc., only to find nothing. One nurse commented that she saw a “tremor” in his leg. We
had no idea what that meant at the time. After this discharge, we were referred to a
specialist for an EEG where it was noted he had no abnormal brain activity. I took my baby
home and for 6 months struggled to feed him and keep him awake long enough to get any
nourishment in his little body.
At 6 months, I begged my Pediatrician to send us to somebody…anybody who could help
me understand why my big, beautiful baby boy was still not holding his head up, wanted to
sleep all the time and refused to suck without being made totally miserable with a cold wet
wash cloth or laying flat on a hard table. She finally agreed. Within weeks we were at a
Children’s Hospital being told he was blind, would never walk and severely mentally
retarded. Devastation!
We took Zach home, got him into therapy and struggled to make sense of what went
wrong. He never wanted to eat and always wanted to sleep. I found myself on a mission, a
mission to keep my child alive, fed and hopefully some day to walk.
I became a single mom when Zach was 2 ½ and moved back to my hometown with my
parents. Zach continued with therapy, all the while struggling to eat and stay awake.
After learning to crawl at the age of 3, one day Zach suddenly fell flat of his face, was
awake but not responding to my mom. She called me at work hysterical…I flew home only
to find all was well again. Thinking this was a random situation, we were concerned but
thought nothing of it really. It happened again. Then again and again. Each time my mom
would call me home from work hysterical. It just happened that our Pediatrician was also a
retired neurologist. He sent us to a local hospital, ran an EEG and found Zach was having
up to 100 seizures a day but the only seizures we could see were the “drop attacks”. The
others were petit mal or staring spells. He mentioned in conversation that Zach’s EEG
looked like Lennox Gastaut. He sent us to MUSC in Charleston, SC where Zach had further
testing and confirmation that he did have Lennox Gastaut Syndrome. No one could really
tell us much about it other than it was a seizure disorder. It wasn’t until the internet took off
and I had massive information at my fingertips that I learned more and found out that it was
uncommon and just how devastating it can be.
Zach has been on many medications (starting with Tegretol at age 3) and combinations of
medications trying to control the multiple types of seizures he has. We are currently on
Keppra and Felbatol, he also has a Vagus Nerve Stimulator (VNS). If a medication causes
him to sleep, I take him off of it. I cannot stand to see him sleep all the time. I want him to
see the world as much as he can and enjoy what life has to offer him. There have been
many falls, we’ve worn helmets and had lots of stitches. Zach still has numerous seizures
daily and we consider it a blessing from God on the days where he only has a few.
Zach did learn to walk at the age of 4 ½. He walked his first 2 steps the day he had eye
surgery to correct nystagmus and muscle weakness (by the way, he‘s not blind). It was a
miracle! He has never spoken a word, always wears a smile, loves to give hugs and open
mouth kisses!
I am still a single mom. We live 10 minutes from my wonderful parents who have helped me
raise Zach and give him the best life possible. We are currently experiencing some
regression with Zach’s physical abilities and he still HATES to eat so we supplement with
Boost, milk shakes and whatever he will allow me to stick in his mouth. It has been 19 years
of trial and error. Sometimes we succeed, other times we just change the game plan.
For new parents, I pray that God gives you peace. Peace to deal with the daily struggles
that face you. Always remember, quality of life matters and enjoy your precious child for
who he/she is. My son Zach has taught me more by not speaking a word than years of
schooling could have. Never give up hope!
God bless all of you!
Gay Propst - Zach’s Mom
etc., only to find nothing. One nurse commented that she saw a “tremor” in his leg. We
had no idea what that meant at the time. After this discharge, we were referred to a
specialist for an EEG where it was noted he had no abnormal brain activity. I took my baby
home and for 6 months struggled to feed him and keep him awake long enough to get any
nourishment in his little body.
At 6 months, I begged my Pediatrician to send us to somebody…anybody who could help
me understand why my big, beautiful baby boy was still not holding his head up, wanted to
sleep all the time and refused to suck without being made totally miserable with a cold wet
wash cloth or laying flat on a hard table. She finally agreed. Within weeks we were at a
Children’s Hospital being told he was blind, would never walk and severely mentally
retarded. Devastation!
We took Zach home, got him into therapy and struggled to make sense of what went
wrong. He never wanted to eat and always wanted to sleep. I found myself on a mission, a
mission to keep my child alive, fed and hopefully some day to walk.
I became a single mom when Zach was 2 ½ and moved back to my hometown with my
parents. Zach continued with therapy, all the while struggling to eat and stay awake.
After learning to crawl at the age of 3, one day Zach suddenly fell flat of his face, was
awake but not responding to my mom. She called me at work hysterical…I flew home only
to find all was well again. Thinking this was a random situation, we were concerned but
thought nothing of it really. It happened again. Then again and again. Each time my mom
would call me home from work hysterical. It just happened that our Pediatrician was also a
retired neurologist. He sent us to a local hospital, ran an EEG and found Zach was having
up to 100 seizures a day but the only seizures we could see were the “drop attacks”. The
others were petit mal or staring spells. He mentioned in conversation that Zach’s EEG
looked like Lennox Gastaut. He sent us to MUSC in Charleston, SC where Zach had further
testing and confirmation that he did have Lennox Gastaut Syndrome. No one could really
tell us much about it other than it was a seizure disorder. It wasn’t until the internet took off
and I had massive information at my fingertips that I learned more and found out that it was
uncommon and just how devastating it can be.
Zach has been on many medications (starting with Tegretol at age 3) and combinations of
medications trying to control the multiple types of seizures he has. We are currently on
Keppra and Felbatol, he also has a Vagus Nerve Stimulator (VNS). If a medication causes
him to sleep, I take him off of it. I cannot stand to see him sleep all the time. I want him to
see the world as much as he can and enjoy what life has to offer him. There have been
many falls, we’ve worn helmets and had lots of stitches. Zach still has numerous seizures
daily and we consider it a blessing from God on the days where he only has a few.
Zach did learn to walk at the age of 4 ½. He walked his first 2 steps the day he had eye
surgery to correct nystagmus and muscle weakness (by the way, he‘s not blind). It was a
miracle! He has never spoken a word, always wears a smile, loves to give hugs and open
mouth kisses!
I am still a single mom. We live 10 minutes from my wonderful parents who have helped me
raise Zach and give him the best life possible. We are currently experiencing some
regression with Zach’s physical abilities and he still HATES to eat so we supplement with
Boost, milk shakes and whatever he will allow me to stick in his mouth. It has been 19 years
of trial and error. Sometimes we succeed, other times we just change the game plan.
For new parents, I pray that God gives you peace. Peace to deal with the daily struggles
that face you. Always remember, quality of life matters and enjoy your precious child for
who he/she is. My son Zach has taught me more by not speaking a word than years of
schooling could have. Never give up hope!
God bless all of you!
Gay Propst - Zach’s Mom