July, 2008
Joe is going on 10 years old, the doctor’s told us he wouldn’t live through
Kindergarten. No matter what life seems to throw at him, he throws it right
back, relentlessly. Joe was diagnosed at 17 months. I don’t know much
about him before age 5 as I did not begin to work with him until then.
Joe is going on 10 years old, the doctor’s told us he wouldn’t live through
Kindergarten. No matter what life seems to throw at him, he throws it right
back, relentlessly. Joe was diagnosed at 17 months. I don’t know much
about him before age 5 as I did not begin to work with him until then.
I have however seen pictures and have heard endless tales of his early childhood.
Before he was diagnosed he spoke several words and walked fairly well. Well enough
to walk on the hardwood floors of his mother’s historical home without a faceguard or
assistance. He loved his mother’s grand piano and would push the keys one by one.
He loved to be outside with the trees and his first word was “fish”. He would smile and
laugh often.
Eventually the seizures took over. Before age 5 he would be non-verbal, need a face-
guard on his helmet and be diagnosed as severely mentally retarded. Joe does not
know his name; he does not look up or at you when you call his name. He rarely
expresses his emotions or has the ability to “fear”. He will make what we call “Joe”
sounds..almost a humming sounds or the sound your mouth makes when you are
blowing out with your mouth closed (the donald duck complex). He does not recognize
but few family members and me and that is not a sure thing either, it’s just our opinion.
He rarely smiles on his own and does not laugh. Most times when he is smiling it is a
sign that a seizure is on its way or that he is seizing. He eats finger foods, uses a
sippie cup and is incontinent. He wears a helmet with a faceguard when out of his
wheelchair at all times. We never know if there is something wrong with Joe, or if he
wants something. If he doesn’t feel good, and if seems unlike himself we cannot ask
him. It is a constant battle of trial and error. Does he have a tummy ache? Is he
hungry? What does he want to drink? Do you want to play with this toy? Are you
sleepy? Does this hurt? Are you okay? What do you want? What do you need? All
those questions go unanswered everyday.
The struggle for finding not only the right medications as well as the appropriate
amount of those medications has been ongoing. As you may know from reading
information about LGS, typical treatments for seizures usually do not work for those
with LGS. We’ve also had to adjust as he has grown in size and more recently
because the battery in his VNS is dying. He now takes Keppra, Zonegram &
Clonazapam. We also have Diazapam and Lonazapam on hand for extended seizure
periods. On top of those he takes a multi-vitamin and a child’s laxative. Joe’s VNS was
a first for the state of Idaho and for the surgeon. He holds the national record for
amount of times his VNS has been activated which brings me to his seizures.
For the majority of the first year I worked with him, the seizures we saw with Joe were
absence seizures & atypical absence seizures (starring spells, licking lips, drooling,
eye flutters); myoclonic & atonic seizures (convulsion & drop) seizures. He’d have
several a day, sometimes I was unsure if he was having one or not. I would swipe his
VNS with a magnet up to three times and try to bring him out of it by playing with his
face, using a cold washcloth on his face or other distractions. If after all of that I could
not pull him out I would administer Diazapam. (The school nurse once told me that if a
grown adult were to take the amount of Diazapam he was given, they would be out
cold) He would fall asleep for up to an hour and then continue on with his day. I would
say that in that first year he had between 5-30 seizures per day. (A “zero” day
happened once in a blue moon) I remember the first day he had a tonic-clonic (grand-
mal). I had just finished changing him and his whole body when stiff, arms raised high
above his head and he screamed out and began to cry. I immediately thought he had
hurt himself since Joe had never cried to that day during any seizure, much less
screamed out. The school nurse said he was fine. It wasn’t until the next day when we
saw it again and realized it was a grand mal and that he wasn’t actually screaming on
his own, the seizure was forcing the air out of his vocal chords. Ever since then Joe’s
seizures have intensified. We are seeing less and less what we call “minor seizures”
and more and more drop and grand-mal seizures. I have read in several places that as
children with LGS grow older they tend to grow out of the drop seizures but it is not the
case with Joe. On average for the past three years Joe has anywhere between 1-8
(sometimes more) grand mal seizures a day on top of 2-3 drops and several “minor”
seizures. It just depends on the day.
More recently it had become worse because his battery in his VNS was almost dead,
or dead. The neurologist did not know because the version he had is much older and
did not give any indication of how dead it was. Remember as I said earlier, Joe has the
national record for how often his VNS is activated ~ once every 7 seconds. Just today,
Joe had surgery to replace his old VNS with a newer, smaller, more powerful version of
a device than the old one. The replacement surgery was also a first for the state of
Idaho and the surgeon. Now all we are to do is to wait and see. Will the newer device
help? Will the seizures fall under a bit more control? We pray.
Joe’s day to day life. We do not allow LGS and the seizures define who Joe is. He goes
to school in a public elementary school. He is assigned to a severe & profound
classroom. He joins his regular grade classmates for music or library if he is up to it.
While in school he does sensory and life-skills work as well as gross/fine motor skill
work. He spends time exploring in the school gym, on the playground and in the
classroom out of his wheelchair and on his feet. While at home, we let him be the little
boy that he is. He is never in his wheelchair. We use it strictly for transportation
services. Walking is his one freedom and it would be a crime to not allow it. Since Joe
cannot look out for his own safety, we do it for him. He has a large space that is “joe-
proofed”. He spends his afternoons and evenings walking around the room with
breaks here and there. He has some autistic tendencies when it comes to the senses.
He loves textures, doorknobs, vents, windows, books & binders. He will spend several
minutes feeling these things. He has several toys he plays with that delight him and he
loves keyboards. We take him to the parks where he explores all the different textures
of the playground equipment, takes rides down the slides (with me) and in the swings.
We take him swimming ~ he loves the water so much. He splashes and makes “Joe”
sounds. There are two things we know for sure he remembers from his pre-LGS days
– pianos & trees. When at the park he will run towards trees and spend several
minutes feeling them & hugging them. When put in front of a piano he will push the
keys one by one or run his finger while walking up and down the scale of it. Does he
have seizures in the midst of all this activity? He sure does. Does that stop him from
continuing on? No, he pauses and then keeps going. It is not uncommon for Joe to
have a drop or a grand-mal seizure while walking or playing. It amazes me that on
almost all the drop occasions and nearly on the grand-mal occasions ~ he gets right
back to what he was doing ~ virtually unfazed by what has just happened. We have
learned to follow his lead ~ to let him be.
Walking is probably the single most important factor when it comes to independence
for Joe. It is the only thing he can do independently most of the time. Joe does
however, have his own sense of balance. He walks sideways and sidesteps most of the
time. He appears wobbily and unbalanced to anyone who has not spent time with him.
An inexperienced person would be on edge watching him, thinking he was destined to
fall but then be pleasantly surprised when he doesn’t. If you hold onto him ~ it messes
with his sense of balance and he ends up falling more than if you were to let him
alone. He wears a helmet with a faceguard and can walk independently on the carpet,
the grass, gym mats or playground sand/chips. We use minimal hands-on assistance
when he is on harder surfaces. One of the, if not the most difficult struggle we have
had and continue to have is the issue of walking while he is at school. Joe’s mother is
an attorney; she has fought and fought through the school district, the city and the
doctors for Joe. She is not one to stand aside and agree with a decision because the
opposite party thinks it would be easier or because they don’t feel like putting in the
effort. It has been an uphill battle in all areas of Joe’s life ~ I’m sure any LGS parent
would tell you the same and have empathy for her. Joe had a bad fall at school one
day. I was a witness to what happened. He had been sleeping on the carpeted floor,
not more than two inches from the laminate flooring. It was policy that Joe was never to
be left alone even when he was sleeping. He had a pattern of waking up and standing
up quite quickly which is exactly what he did on this particular day. He had socks on
and no helmet. The paraprofessional (not me~I had Joe in the mornings, this was the
afternoon) responsible for him at that time had walked away. By the time that
paraprofessional (not me) could catch his shirt; he had walked
onto and slipped on the laminate flooring, smacking his forehead on the hard floor.
Joe although bruised and swollen thankfully did not incur any serious injuries. His
mother and father were obviously upset and unraveled at the neglect of the
paraprofessional. Within a week of the incident, in fear of the mom suing the school
district the teacher and principal decided that Joe was no longer allowed to walk at
school. I could not believe it. And so the battle began…it was a long, grueling and at
times political joust that involved attorneys and mediators. Joe & I became the black
sheep of the school. The description of this battle, although interesting and relevant
could be a whole paper in itself~ I’ll submit it at another time. In the end there was a
compromise. Joe was allowed to walk unassisted on the mats in the gym and on the
soft grass in a specific area of the field. If he were to walk on carpet, playground
chips/sand or any other surface it would be maximum hands-on. At least he still gets to
be the little explorer he is, even if he is limited by the guidelines of the school.
I have told you all the things Joe cannot do and some of the things he can, but it is
within the first hours of meeting Joe that you know that the things he cannot do along
with the seizures he has do not define who he is. He melts your heart in minutes. The
first time he really “looks” you in the eyes and reaches out to feel and play with your
face, you realize how alive and human he is. He is not the kid with LGS, not a statistic,
not a number, he is a little boy named Joe who is staring LGS in the face and not
backing down. He is a boy who has defeated unimaginable odds. Everyday I learn
something new. He ceases to amaze me.
Patricia Dupras
This contribution is a reflection of my opinion and does not reflect the opinion of
anyone but myself.
Before he was diagnosed he spoke several words and walked fairly well. Well enough
to walk on the hardwood floors of his mother’s historical home without a faceguard or
assistance. He loved his mother’s grand piano and would push the keys one by one.
He loved to be outside with the trees and his first word was “fish”. He would smile and
laugh often.
Eventually the seizures took over. Before age 5 he would be non-verbal, need a face-
guard on his helmet and be diagnosed as severely mentally retarded. Joe does not
know his name; he does not look up or at you when you call his name. He rarely
expresses his emotions or has the ability to “fear”. He will make what we call “Joe”
sounds..almost a humming sounds or the sound your mouth makes when you are
blowing out with your mouth closed (the donald duck complex). He does not recognize
but few family members and me and that is not a sure thing either, it’s just our opinion.
He rarely smiles on his own and does not laugh. Most times when he is smiling it is a
sign that a seizure is on its way or that he is seizing. He eats finger foods, uses a
sippie cup and is incontinent. He wears a helmet with a faceguard when out of his
wheelchair at all times. We never know if there is something wrong with Joe, or if he
wants something. If he doesn’t feel good, and if seems unlike himself we cannot ask
him. It is a constant battle of trial and error. Does he have a tummy ache? Is he
hungry? What does he want to drink? Do you want to play with this toy? Are you
sleepy? Does this hurt? Are you okay? What do you want? What do you need? All
those questions go unanswered everyday.
The struggle for finding not only the right medications as well as the appropriate
amount of those medications has been ongoing. As you may know from reading
information about LGS, typical treatments for seizures usually do not work for those
with LGS. We’ve also had to adjust as he has grown in size and more recently
because the battery in his VNS is dying. He now takes Keppra, Zonegram &
Clonazapam. We also have Diazapam and Lonazapam on hand for extended seizure
periods. On top of those he takes a multi-vitamin and a child’s laxative. Joe’s VNS was
a first for the state of Idaho and for the surgeon. He holds the national record for
amount of times his VNS has been activated which brings me to his seizures.
For the majority of the first year I worked with him, the seizures we saw with Joe were
absence seizures & atypical absence seizures (starring spells, licking lips, drooling,
eye flutters); myoclonic & atonic seizures (convulsion & drop) seizures. He’d have
several a day, sometimes I was unsure if he was having one or not. I would swipe his
VNS with a magnet up to three times and try to bring him out of it by playing with his
face, using a cold washcloth on his face or other distractions. If after all of that I could
not pull him out I would administer Diazapam. (The school nurse once told me that if a
grown adult were to take the amount of Diazapam he was given, they would be out
cold) He would fall asleep for up to an hour and then continue on with his day. I would
say that in that first year he had between 5-30 seizures per day. (A “zero” day
happened once in a blue moon) I remember the first day he had a tonic-clonic (grand-
mal). I had just finished changing him and his whole body when stiff, arms raised high
above his head and he screamed out and began to cry. I immediately thought he had
hurt himself since Joe had never cried to that day during any seizure, much less
screamed out. The school nurse said he was fine. It wasn’t until the next day when we
saw it again and realized it was a grand mal and that he wasn’t actually screaming on
his own, the seizure was forcing the air out of his vocal chords. Ever since then Joe’s
seizures have intensified. We are seeing less and less what we call “minor seizures”
and more and more drop and grand-mal seizures. I have read in several places that as
children with LGS grow older they tend to grow out of the drop seizures but it is not the
case with Joe. On average for the past three years Joe has anywhere between 1-8
(sometimes more) grand mal seizures a day on top of 2-3 drops and several “minor”
seizures. It just depends on the day.
More recently it had become worse because his battery in his VNS was almost dead,
or dead. The neurologist did not know because the version he had is much older and
did not give any indication of how dead it was. Remember as I said earlier, Joe has the
national record for how often his VNS is activated ~ once every 7 seconds. Just today,
Joe had surgery to replace his old VNS with a newer, smaller, more powerful version of
a device than the old one. The replacement surgery was also a first for the state of
Idaho and the surgeon. Now all we are to do is to wait and see. Will the newer device
help? Will the seizures fall under a bit more control? We pray.
Joe’s day to day life. We do not allow LGS and the seizures define who Joe is. He goes
to school in a public elementary school. He is assigned to a severe & profound
classroom. He joins his regular grade classmates for music or library if he is up to it.
While in school he does sensory and life-skills work as well as gross/fine motor skill
work. He spends time exploring in the school gym, on the playground and in the
classroom out of his wheelchair and on his feet. While at home, we let him be the little
boy that he is. He is never in his wheelchair. We use it strictly for transportation
services. Walking is his one freedom and it would be a crime to not allow it. Since Joe
cannot look out for his own safety, we do it for him. He has a large space that is “joe-
proofed”. He spends his afternoons and evenings walking around the room with
breaks here and there. He has some autistic tendencies when it comes to the senses.
He loves textures, doorknobs, vents, windows, books & binders. He will spend several
minutes feeling these things. He has several toys he plays with that delight him and he
loves keyboards. We take him to the parks where he explores all the different textures
of the playground equipment, takes rides down the slides (with me) and in the swings.
We take him swimming ~ he loves the water so much. He splashes and makes “Joe”
sounds. There are two things we know for sure he remembers from his pre-LGS days
– pianos & trees. When at the park he will run towards trees and spend several
minutes feeling them & hugging them. When put in front of a piano he will push the
keys one by one or run his finger while walking up and down the scale of it. Does he
have seizures in the midst of all this activity? He sure does. Does that stop him from
continuing on? No, he pauses and then keeps going. It is not uncommon for Joe to
have a drop or a grand-mal seizure while walking or playing. It amazes me that on
almost all the drop occasions and nearly on the grand-mal occasions ~ he gets right
back to what he was doing ~ virtually unfazed by what has just happened. We have
learned to follow his lead ~ to let him be.
Walking is probably the single most important factor when it comes to independence
for Joe. It is the only thing he can do independently most of the time. Joe does
however, have his own sense of balance. He walks sideways and sidesteps most of the
time. He appears wobbily and unbalanced to anyone who has not spent time with him.
An inexperienced person would be on edge watching him, thinking he was destined to
fall but then be pleasantly surprised when he doesn’t. If you hold onto him ~ it messes
with his sense of balance and he ends up falling more than if you were to let him
alone. He wears a helmet with a faceguard and can walk independently on the carpet,
the grass, gym mats or playground sand/chips. We use minimal hands-on assistance
when he is on harder surfaces. One of the, if not the most difficult struggle we have
had and continue to have is the issue of walking while he is at school. Joe’s mother is
an attorney; she has fought and fought through the school district, the city and the
doctors for Joe. She is not one to stand aside and agree with a decision because the
opposite party thinks it would be easier or because they don’t feel like putting in the
effort. It has been an uphill battle in all areas of Joe’s life ~ I’m sure any LGS parent
would tell you the same and have empathy for her. Joe had a bad fall at school one
day. I was a witness to what happened. He had been sleeping on the carpeted floor,
not more than two inches from the laminate flooring. It was policy that Joe was never to
be left alone even when he was sleeping. He had a pattern of waking up and standing
up quite quickly which is exactly what he did on this particular day. He had socks on
and no helmet. The paraprofessional (not me~I had Joe in the mornings, this was the
afternoon) responsible for him at that time had walked away. By the time that
paraprofessional (not me) could catch his shirt; he had walked
onto and slipped on the laminate flooring, smacking his forehead on the hard floor.
Joe although bruised and swollen thankfully did not incur any serious injuries. His
mother and father were obviously upset and unraveled at the neglect of the
paraprofessional. Within a week of the incident, in fear of the mom suing the school
district the teacher and principal decided that Joe was no longer allowed to walk at
school. I could not believe it. And so the battle began…it was a long, grueling and at
times political joust that involved attorneys and mediators. Joe & I became the black
sheep of the school. The description of this battle, although interesting and relevant
could be a whole paper in itself~ I’ll submit it at another time. In the end there was a
compromise. Joe was allowed to walk unassisted on the mats in the gym and on the
soft grass in a specific area of the field. If he were to walk on carpet, playground
chips/sand or any other surface it would be maximum hands-on. At least he still gets to
be the little explorer he is, even if he is limited by the guidelines of the school.
I have told you all the things Joe cannot do and some of the things he can, but it is
within the first hours of meeting Joe that you know that the things he cannot do along
with the seizures he has do not define who he is. He melts your heart in minutes. The
first time he really “looks” you in the eyes and reaches out to feel and play with your
face, you realize how alive and human he is. He is not the kid with LGS, not a statistic,
not a number, he is a little boy named Joe who is staring LGS in the face and not
backing down. He is a boy who has defeated unimaginable odds. Everyday I learn
something new. He ceases to amaze me.
Patricia Dupras
This contribution is a reflection of my opinion and does not reflect the opinion of
anyone but myself.
