Our beautiful baby girl, Hannah Rae Ellefson, was born on May 24,
2003. She was a healthy, happy, active little girl until she suffered
a series of seizures on October 11, 2006 at the age of 3 ½ years
old. Within one month of her first seizures she was having multiple
2003. She was a healthy, happy, active little girl until she suffered
a series of seizures on October 11, 2006 at the age of 3 ½ years
old. Within one month of her first seizures she was having multiple
daily seizures including tonic-clonic, tonic, atonic (drop seizures), myoclonic, and
numerous episodes of non-convulsive status seizures. Hannah very quickly
deteriorated in cognitive, physical and language abilities. She was diagnosed with
Lennox-Gastaut Syndrome and we were absolutely devastated. Doctors in Calgary,
Alberta Canada, tried to stop the seizures with Trileptal, Keppra, Clobazam, Depokote,
Clonazepam, Topamax, Lamotrigine....nothing worked. We wanted to try the ketogenic
diet and pushed hard to get her approved. She started the diet in November 2006 and
by February 2007 we noticed a decrease in her seizures of about 25%. Hannah was
started on Intravenous Immunoglobulin Therapy once every three weeks in January
(she was then cut off by the doctors for 3 months), and then IVIG was restarted in May
2007 and continues today with much improvement.
On June 30, 2007 we took Hannah for a stem cell treatment and within 2 months, all
seizures stopped with the exception of tonic seizures during sleep. She has not had an
awake seizure of any kind since August 2007. Every month we saw improvements in
her cognitive function, social skills, and fine and gross motor skills. In December 2007
we returned for a second stem cell treatment and the tonic seizures are almost
stopped. She has only about 2-3 tonic seizures in sleep per month and her EEG has
improved. Her last EEG was vastly better and the slow-spike and wave pattern
synonymous with Lennox-Gastaut Syndrome was gone, having been present for over
one year. Today, Hannah is considered cognitively age appropriate with advanced
speech for age. She has a fine motor delay that is considered severe and a mild gross
motor delay. We have weaned a lot of her medications, but she is still on a low dose of
Epival (325mg/day), Topamax (50mg/day), and Clonazepam (1.5mg at night only). She
continues on the ketogenic diet at a 3:1 ratio.
This disease has been the most challenging and heart wrenching journey we have
ever had to face. Hannah is our little superstar, full of life and always happy. She is
overcoming obstacles and acquiring new skills daily. There is hope for our children.
We are witnessing a miracle with Hannah and I believe that a cure for Lennox-Gastaut
Syndrome will be found. We will never give up fighting and we thank the LGS
foundation for raising awareness and support for children everywhere with Lennox
Gastaut Syndrome. Hannah’s website is www.hopeforhannah.ca and my husband and I
can be contacted at hope -for-hannah@hotmail.com
Carolyn and Steve Ellefson
numerous episodes of non-convulsive status seizures. Hannah very quickly
deteriorated in cognitive, physical and language abilities. She was diagnosed with
Lennox-Gastaut Syndrome and we were absolutely devastated. Doctors in Calgary,
Alberta Canada, tried to stop the seizures with Trileptal, Keppra, Clobazam, Depokote,
Clonazepam, Topamax, Lamotrigine....nothing worked. We wanted to try the ketogenic
diet and pushed hard to get her approved. She started the diet in November 2006 and
by February 2007 we noticed a decrease in her seizures of about 25%. Hannah was
started on Intravenous Immunoglobulin Therapy once every three weeks in January
(she was then cut off by the doctors for 3 months), and then IVIG was restarted in May
2007 and continues today with much improvement.
On June 30, 2007 we took Hannah for a stem cell treatment and within 2 months, all
seizures stopped with the exception of tonic seizures during sleep. She has not had an
awake seizure of any kind since August 2007. Every month we saw improvements in
her cognitive function, social skills, and fine and gross motor skills. In December 2007
we returned for a second stem cell treatment and the tonic seizures are almost
stopped. She has only about 2-3 tonic seizures in sleep per month and her EEG has
improved. Her last EEG was vastly better and the slow-spike and wave pattern
synonymous with Lennox-Gastaut Syndrome was gone, having been present for over
one year. Today, Hannah is considered cognitively age appropriate with advanced
speech for age. She has a fine motor delay that is considered severe and a mild gross
motor delay. We have weaned a lot of her medications, but she is still on a low dose of
Epival (325mg/day), Topamax (50mg/day), and Clonazepam (1.5mg at night only). She
continues on the ketogenic diet at a 3:1 ratio.
This disease has been the most challenging and heart wrenching journey we have
ever had to face. Hannah is our little superstar, full of life and always happy. She is
overcoming obstacles and acquiring new skills daily. There is hope for our children.
We are witnessing a miracle with Hannah and I believe that a cure for Lennox-Gastaut
Syndrome will be found. We will never give up fighting and we thank the LGS
foundation for raising awareness and support for children everywhere with Lennox
Gastaut Syndrome. Hannah’s website is www.hopeforhannah.ca and my husband and I
can be contacted at hope -for-hannah@hotmail.com
Carolyn and Steve Ellefson
