My son Adam is 22 years old - now drug free and seizure free - but not without
years of trial and error, numerous drugs and terrible side effects.
My journey with epilepsy began in 1991 when my son Adam, then 4 years old,
had his first seizure. Like most parents, it was the beginning of years of
struggle to control seizures, constant doctors appointments, changing of
years of trial and error, numerous drugs and terrible side effects.
My journey with epilepsy began in 1991 when my son Adam, then 4 years old,
had his first seizure. Like most parents, it was the beginning of years of
struggle to control seizures, constant doctors appointments, changing of
medications 6 times, experimental drugs and terrible side effects. The discussion of
surgery seemed like the last option.
Adam was diagnosed with Lennox Gastaut Syndrome. He had mutliple seizure types
including absence seizures all day long, tonic clonic 3 to 4 times a week, drop seizures
and more. It was devastating to watch him turn from a bright happy little boy to a child who
could no longer function and looked sad and despressed. His prognosis was grim --
continued seizures and progressive mental retardation.
Along with epilepsy, Adam had Asperger's syndrome, a form of autism. Although he could
talk, he was extremely obsessive compulsive and anti-social. He preferred to be alone
and as his seizures increased, his abilities decreased. The side effects of the medication
left him lethargic. He had stomach aches, leg cramps, mouth burn, thinning hair and his
short term memory was gone making learning a challenge. He spent a lot of time throwing
up and sleeping on the couch in his classroom.
Worse than all this - he became angry and violent. He screamed for no reason, he could
not leave the house because he would not find his way home 2 houses away. He could
never be left with other children alone. In grade 3 he attacked his teacher who was sent
to the hospital in an ambulance. He was transferred to a school for children with behavor
problems. Things just seemed to go from bad to worse. His life was out of control.
For eight long years, his epilepsy consumed my life and all my attention went in that
direction. Now that my son is seizure free, I remember what our family went through, so I
dedicate much of my time to helping educate other moms, shorten their learning curve,
tell them the mistakes I made, and hopefully made their journey a little easier.
When nothing else worked - I prayed. Within 3 days, my prayers were answered. On TV,
Dateline NBC did a special show on epilepsy and talked about a treatment, a high-fat diet
called the Ketogenic diet that worked well on kids when medications failed. I knew it was
the answer we were searching for. About 3 months later, when Adam was 8 years old, we
started the ketogenic diet. Within 3 days, the seizures stopped. It was like a miracle. Our
hope returned.
That was 14 years ago - hard to believe. Once we got the seizures under control, we
worked on the autism and found an equally effective treatment called Neurotherapy.
In early April of 2009, Adam turned 22. In 2005 he graduated from high school with his
peers, after completing a life skills program. He looked so handsome. Although thriving in
most areas of his life, there was some lingering damage to his brain from the many
episodes of Status seizures.
I now work on a website dedicated to helping other moms. My site is called
www.EpilepsyMoms.com and shares stories from other parents, a newsletter and free
podcasts interviews I do on a variety of topics related to epilepsy.
As more treatment options become available, parents are learning to become more
involved in their childs treatment decisions so becoming educated is more important that
ever. Epilepsy is a balancing act and I hope I can encourage you by sharing what I
learned.
Warmly,
Arlene Martell
Publisher: www.EpilepsyMoms.com
White Rock, B.C. (Canada)
surgery seemed like the last option.
Adam was diagnosed with Lennox Gastaut Syndrome. He had mutliple seizure types
including absence seizures all day long, tonic clonic 3 to 4 times a week, drop seizures
and more. It was devastating to watch him turn from a bright happy little boy to a child who
could no longer function and looked sad and despressed. His prognosis was grim --
continued seizures and progressive mental retardation.
Along with epilepsy, Adam had Asperger's syndrome, a form of autism. Although he could
talk, he was extremely obsessive compulsive and anti-social. He preferred to be alone
and as his seizures increased, his abilities decreased. The side effects of the medication
left him lethargic. He had stomach aches, leg cramps, mouth burn, thinning hair and his
short term memory was gone making learning a challenge. He spent a lot of time throwing
up and sleeping on the couch in his classroom.
Worse than all this - he became angry and violent. He screamed for no reason, he could
not leave the house because he would not find his way home 2 houses away. He could
never be left with other children alone. In grade 3 he attacked his teacher who was sent
to the hospital in an ambulance. He was transferred to a school for children with behavor
problems. Things just seemed to go from bad to worse. His life was out of control.
For eight long years, his epilepsy consumed my life and all my attention went in that
direction. Now that my son is seizure free, I remember what our family went through, so I
dedicate much of my time to helping educate other moms, shorten their learning curve,
tell them the mistakes I made, and hopefully made their journey a little easier.
When nothing else worked - I prayed. Within 3 days, my prayers were answered. On TV,
Dateline NBC did a special show on epilepsy and talked about a treatment, a high-fat diet
called the Ketogenic diet that worked well on kids when medications failed. I knew it was
the answer we were searching for. About 3 months later, when Adam was 8 years old, we
started the ketogenic diet. Within 3 days, the seizures stopped. It was like a miracle. Our
hope returned.
That was 14 years ago - hard to believe. Once we got the seizures under control, we
worked on the autism and found an equally effective treatment called Neurotherapy.
In early April of 2009, Adam turned 22. In 2005 he graduated from high school with his
peers, after completing a life skills program. He looked so handsome. Although thriving in
most areas of his life, there was some lingering damage to his brain from the many
episodes of Status seizures.
I now work on a website dedicated to helping other moms. My site is called
www.EpilepsyMoms.com and shares stories from other parents, a newsletter and free
podcasts interviews I do on a variety of topics related to epilepsy.
As more treatment options become available, parents are learning to become more
involved in their childs treatment decisions so becoming educated is more important that
ever. Epilepsy is a balancing act and I hope I can encourage you by sharing what I
learned.
Warmly,
Arlene Martell
Publisher: www.EpilepsyMoms.com
White Rock, B.C. (Canada)
| ADAM'S STORY |
| Copyright LGS Foundation, 2010 |