Our daughter, Angel Dominica was born in
1979. She was delivered by C-section after a
55 hour labor, which her neurologists have
suggested caused the LGS. Her apgar scores
were fine, and she developed normally until
march of 1982 when she had her 1st gran mal
seizure. Except for chronic ear infections, and
the placement of "tubes" in her ears, she was,
and still is, a very healthy child.
1979. She was delivered by C-section after a
55 hour labor, which her neurologists have
suggested caused the LGS. Her apgar scores
were fine, and she developed normally until
march of 1982 when she had her 1st gran mal
seizure. Except for chronic ear infections, and
the placement of "tubes" in her ears, she was,
and still is, a very healthy child.
After that 1st seizure, she continued to have all the types of seizures that Lennox
Gastaut patients go through. From Gran mals, to Peti mals, staring spells, drop
attacks etc.
Watching your child have hundreds of seizures per day is heart wrenching. I think only
LGS parents truly understand the depth of emotional pain we go through.
She has had various injuries due to falls from the seizures, since we never know when
a seizure will happen. The common thing about this syndrome is the unexpected.
Angel has been on many types of seizure meds. As we all know with Lennox Gastaut,
the meds do not control the seizures, and we have learned to accept a certain amount
of seizure activity in exchange for Angel being able to function, and not be drugged
out. She has been on Felbatol and Depakote for many years now, and this combo has
worked well.
Angel had the Vagus Nerve Stimulator placed in her upper chest when it was new on
the market. It never controlled the seizures, and due to her being so petite, the device
caused her constant pain. The VNS was removed about 6 months after insertion, and
the copper wire remains in her neck.
She is currently in a day program for developmentally disabled adults. In California
there is Special education until age 22 provided by the school district. Starting at age
18 the child may leave the school program, and attend "Day programs".
Angel is at a center which is scheduled much like a typical school day. She is able to
choose classes ranging from computers to ceramics, wood shop, organic gardening,
music appreciation and more. We feel fortunate to live in a state which has wonderful
programs for our kids.
I am the main caregiver for Angel, and have not been able to work outside the home,
as I am continually called by her school due to the seizures, and daycare for special
needs children is non existent.
Around age 23 Angel began to display behavioral changes not consistent with her
usual sunny personality. As I research more about LGS, I see that the behavior, not
for the better, can be "normal" for LGS patients.
As we have aged, the time has come to investigate group homes for Angel. The homes
would be available for very limited respite for us in the present, and for her care in the
future. Coming to terms with this prospect has been difficult at best.
Angel is an only child, as we focused on her special needs, and would of needed
support to add more children to the mix.
All of our choices such as where we live, job (health ins.), type of vehicle etc, are
based on what is best for Angel first. Our focus is to protect Angel, and give her the
best possible life.
So far, this 27 year journey of continual seizures has been something that we never
could of done, or wanted to do, without our strong faith in a loving God. He is the one
who gives us courage, and the hope to endure.......
Everyday is different, and I expect the unexpected dealing with this disease. With the
constant, abiding love of my husband, I am able to forge ahead everyday.
Angel's mommy, Gail...
Gastaut patients go through. From Gran mals, to Peti mals, staring spells, drop
attacks etc.
Watching your child have hundreds of seizures per day is heart wrenching. I think only
LGS parents truly understand the depth of emotional pain we go through.
She has had various injuries due to falls from the seizures, since we never know when
a seizure will happen. The common thing about this syndrome is the unexpected.
Angel has been on many types of seizure meds. As we all know with Lennox Gastaut,
the meds do not control the seizures, and we have learned to accept a certain amount
of seizure activity in exchange for Angel being able to function, and not be drugged
out. She has been on Felbatol and Depakote for many years now, and this combo has
worked well.
Angel had the Vagus Nerve Stimulator placed in her upper chest when it was new on
the market. It never controlled the seizures, and due to her being so petite, the device
caused her constant pain. The VNS was removed about 6 months after insertion, and
the copper wire remains in her neck.
She is currently in a day program for developmentally disabled adults. In California
there is Special education until age 22 provided by the school district. Starting at age
18 the child may leave the school program, and attend "Day programs".
Angel is at a center which is scheduled much like a typical school day. She is able to
choose classes ranging from computers to ceramics, wood shop, organic gardening,
music appreciation and more. We feel fortunate to live in a state which has wonderful
programs for our kids.
I am the main caregiver for Angel, and have not been able to work outside the home,
as I am continually called by her school due to the seizures, and daycare for special
needs children is non existent.
Around age 23 Angel began to display behavioral changes not consistent with her
usual sunny personality. As I research more about LGS, I see that the behavior, not
for the better, can be "normal" for LGS patients.
As we have aged, the time has come to investigate group homes for Angel. The homes
would be available for very limited respite for us in the present, and for her care in the
future. Coming to terms with this prospect has been difficult at best.
Angel is an only child, as we focused on her special needs, and would of needed
support to add more children to the mix.
All of our choices such as where we live, job (health ins.), type of vehicle etc, are
based on what is best for Angel first. Our focus is to protect Angel, and give her the
best possible life.
So far, this 27 year journey of continual seizures has been something that we never
could of done, or wanted to do, without our strong faith in a loving God. He is the one
who gives us courage, and the hope to endure.......
Everyday is different, and I expect the unexpected dealing with this disease. With the
constant, abiding love of my husband, I am able to forge ahead everyday.
Angel's mommy, Gail...
| ANGEL'S STORY |
| Copyright LGS Foundation, 2010 |