Another one of our amazing Warrior Ambassador Families:
Jeff and Lisa
Sophie is ten years old. She loves dolls, dancing and girlie clothes. She has three sisters, one of them is her twin, Maya. Her oldest sister is Gabi and the littlest is Emma. They all love playing together swimming, biking drawing and just being little girls. Most of the time they are normal little kids except for the days that Sophie cannot participate due to her unrelenting seizures. Sophie can have several hundred a days causing her to be tired and irritable and making everyone very miserable. If the weather is too hot, if she gets to excited if she doesn’t get enough sleep. We are set up for a disaster.
Sophie has Myoclonic Astatic Epilepsy or Doose syndrome. Diagnosed at four years old we have been fighting every day.
All the conventional medications to treat epilepsy we tried none of which have worked. The side effects so terrible we had to stop them.
Doose Syndrome: Also known as Myoclonic-Astatic Epilepsy (MAE) is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic), and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. The onset of MAE occurs commonly in the first five years of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures.
Sophie also has the VNS (Vagus nerve stimulator, a pacemaker of sorts for her brain) it’s been an amazing treatment for Sophie stopping a lot of her seizure and most dramatically eliminated her big drop seizures. Unfortunately, with her, the VNS has to be set at an incredibly high cycle and tends to only last two years. What this means is surgery to replace her battery every two years. It means a summer of plans delayed and deferred to allow Sophie to heal. Her sister accepts it as normal, and we move on. No children should see this as a normal part of growing up.
VNS, Vagus Nerve Stimulation: The vagus nerve is one of the primary communication pathways between the body and the brain. VNS Therapy delivered by a device (generator) similar to a pacemaker and a thin, flexible wire (lead) that sends mild stimulation to the left vagus nerve. VNS Therapy is not a drug and, therefore, does not have the same side effects and does not interact with other medications. The vagus nerve delivers these periodic stimulations to the brain and helps to prevent electrical irregularities that cause seizures. Treatment is automatically delivered at regular intervals all day, every day so that you do not have to worry about missing a dose.
We would like to see people become more aware of epilepsy in general as they don’t realize seizures are so much more than a convulsion. It can be something a subtle as a blank stare or a momentary loss of awareness. We need to have people stop being afraid of epilepsy and those who suffer from it.
Individuals with epilepsy need to feel empowered to share their stories be accepted time to eliminate the shame some feel. Sophie’s Sisters would tell you they want a cure for epilepsy. They want their sister to live a happy, fulfilling life.
They would also remind people that 1 in 26 will develop epilepsy. You never know when or who. We found this out first hand when Maya also was diagnosed with epilepsy two years ago. As a family, we struggle with not being able to plan or make plans long term.
Epilepsy can take control of our day at any given moment, and we need to be ready for it. Second, we have run out of medications for Sophie. We have chosen a controversial path using CBD oil to treat her seizures, and that limits our ability to travel from our state. We don’t embrace epilepsy we fight it with every breath and step we take and always will.
If you would like to help us or any of the Ambassador Warrior families chosen through the Epilepsy Warriors Foundations Ambassador Program you can do so through this website. Thank you for your support, understanding towards all of us.