- Z
- J
Ethan is our amazing 8 year old warrior.
Ethan had his first grand mal seizure just after he turned three; this was devastating to our family to know the difficult life our sweet boy might be facing. Ethan was placed on an anti-seizure medication and enjoyed six months with no more seizures. We then began experiencing generalized drop seizures. He was having as many as 25 per day. Medications were adjusted with minor improvement, and we lived in drop seizure bliss for 6 more months.
Shortly after this time Ethan was admitted to the hospital with his first case of status epilepticus. He had become totally lethargic and lost the ability to walk and talk. When placed on 24/7 EEG monitoring it was confirmed that he was having at least 1 generalized (this means every area of his brain is seizing) grand mal or drop seizure every three seconds, a total of over 28,000 seizures per day. This helped to explain why Ethan was near vegetative, his brain was unable to recover between each of the seizures. These findings were horrible to hear but we were so happy to take our little boy home after 10 days in the hospital. We had a new neurologist, a treatment plan of new medications and a new rescue plan if this horrible thing ever happened again.
Over the next few years Ethan would fail over 30 different combinations of anti-seizure medications, at times taking up to 6 different medications up to three times per day. These medications were administered in hopes of alleviating his multiple daily seizures. A typical day for Ethan could include up to 20 grand mal (full-body convulsing) seizures lasting up to 30 minutes each with rescue medications administered as well as up to 200 drop seizures per day. He would also be admitted to the hospital about twice per year in status epilepticus. Ethan began to fall behind in school and was required to wear a helmet to protect his head from the many falls he would experience each day. Despite all of the trials Ethan was facing he continued to be a sweet, loving and happy boy.
Over the last year and a half Ethan’s life has become even more challenging. He has been diagnosed with Lennox-Gastaut Syndrome (a rare and severe form of intractable epilepsy involving less than 3% of patients). As in Ethan’s case this form of epilepsy is medication resistant and involves multiple types of seizures. Ethan’s seizures continue to be completely uncontrolled having up to hundreds per day with no reprieve from his treatments.
Due to the many medications Ethan has and is taking his body is being ravaged. He had become extremely malnourished (most anti-seizure medications are appetite suppressing) and had to have a feeding tube surgically placed. He has also experienced deteriorating bone health. He snapped his femur in half, requiring surgically placed hardware, by simply twisting his leg during a seizure then at physical therapy during another small seizure his tibia and fibula were both fractured. Ethan has fallen further behind in school due to the seizures as well as the many days he misses due to seizures and hospitalizations. Ethan has been hospitalized is status epilepticus over six times in the past 18 months, these instances are happening more frequently with greater severity and less positive outcome from rescue procedures.
We are still holding out hope for a treatment to work for Ethan. In addition to medications Ethan is participating in a study on cannabis oil at Primary Children’s Hospital. He is also on the very strict Ketogenic diet. The treatment options that his neurologist would like to try next include brain surgery to place a Vagal Nerve Stimulator, monthly IVIG (intravenous immunoglobulin) infusion and a steroid blast. As parents, we want to be able to provide every chance at an amazing life to our hero of a son, and will do whatever we can possibly do to bring our little boy back to his seizure free life.
We are so grateful for all the help and support we have received up at this point. W appreciate any help that you may be able to provide to go towards current treatments and medical costs as well as future treatment costs. Bless you for anything you can do.
Friends and Family of Ethan
Ethan had his first grand mal seizure just after he turned three; this was devastating to our family to know the difficult life our sweet boy might be facing. Ethan was placed on an anti-seizure medication and enjoyed six months with no more seizures. We then began experiencing generalized drop seizures. He was having as many as 25 per day. Medications were adjusted with minor improvement, and we lived in drop seizure bliss for 6 more months.
Shortly after this time Ethan was admitted to the hospital with his first case of status epilepticus. He had become totally lethargic and lost the ability to walk and talk. When placed on 24/7 EEG monitoring it was confirmed that he was having at least 1 generalized (this means every area of his brain is seizing) grand mal or drop seizure every three seconds, a total of over 28,000 seizures per day. This helped to explain why Ethan was near vegetative, his brain was unable to recover between each of the seizures. These findings were horrible to hear but we were so happy to take our little boy home after 10 days in the hospital. We had a new neurologist, a treatment plan of new medications and a new rescue plan if this horrible thing ever happened again.
Over the next few years Ethan would fail over 30 different combinations of anti-seizure medications, at times taking up to 6 different medications up to three times per day. These medications were administered in hopes of alleviating his multiple daily seizures. A typical day for Ethan could include up to 20 grand mal (full-body convulsing) seizures lasting up to 30 minutes each with rescue medications administered as well as up to 200 drop seizures per day. He would also be admitted to the hospital about twice per year in status epilepticus. Ethan began to fall behind in school and was required to wear a helmet to protect his head from the many falls he would experience each day. Despite all of the trials Ethan was facing he continued to be a sweet, loving and happy boy.
Over the last year and a half Ethan’s life has become even more challenging. He has been diagnosed with Lennox-Gastaut Syndrome (a rare and severe form of intractable epilepsy involving less than 3% of patients). As in Ethan’s case this form of epilepsy is medication resistant and involves multiple types of seizures. Ethan’s seizures continue to be completely uncontrolled having up to hundreds per day with no reprieve from his treatments.
Due to the many medications Ethan has and is taking his body is being ravaged. He had become extremely malnourished (most anti-seizure medications are appetite suppressing) and had to have a feeding tube surgically placed. He has also experienced deteriorating bone health. He snapped his femur in half, requiring surgically placed hardware, by simply twisting his leg during a seizure then at physical therapy during another small seizure his tibia and fibula were both fractured. Ethan has fallen further behind in school due to the seizures as well as the many days he misses due to seizures and hospitalizations. Ethan has been hospitalized is status epilepticus over six times in the past 18 months, these instances are happening more frequently with greater severity and less positive outcome from rescue procedures.
We are still holding out hope for a treatment to work for Ethan. In addition to medications Ethan is participating in a study on cannabis oil at Primary Children’s Hospital. He is also on the very strict Ketogenic diet. The treatment options that his neurologist would like to try next include brain surgery to place a Vagal Nerve Stimulator, monthly IVIG (intravenous immunoglobulin) infusion and a steroid blast. As parents, we want to be able to provide every chance at an amazing life to our hero of a son, and will do whatever we can possibly do to bring our little boy back to his seizure free life.
We are so grateful for all the help and support we have received up at this point. W appreciate any help that you may be able to provide to go towards current treatments and medical costs as well as future treatment costs. Bless you for anything you can do.
Friends and Family of Ethan
Organizer and beneficiary
Brandon Brown
Beneficiary