were told two in three children grow out of this form of epilepsy. In the beginning, his neurologist told us that she was optimistic we will eventually look back on this as a huge bump in the road, however, recently, we were told that they would feel a lot more optimistic in him growing out of this seizure disorder if he would respond to a treatment.”
Robby had a consultation with a neurosurgeon to discuss VNS (Vagus Nerve Stimulator), an implanted device that sends pulses to the brain through the Vagus Nerve at specific intervals in order to decrease seizures. A magnet can also be passed over the implant during a seizure to send an additional pulse in an attempt to ‘interrupt’ the seizure.
“I am very much an advocate for medical marijuana. In my nursing career, I have seen first-hand the benefits for those living with epilepsy and other debilitating conditions. I hope someday people won’t have to jump through hoops to have access to it. I wouldn’t hesitate to advocate for medical marijuana for Robby. I encourage others to educate themselves on this topic.”
Epilepsy can affect a person’s emotional health in many ways, and good emotional health is signifi cant for those with epilepsy as well as for family members, caregivers and friends.
“I have talked to a lot of parents of kids with epilepsy. My family is a great support system. Having people there to listen to me when he has had a cruddy day is very therapeutic,” said Michelle.
Epilepsy Awareness Month focuses on the challenges faced by those with epilepsy, and the importance of creating awareness to support the more than 3.4 million
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people with epilepsy nationwide as well as their caregivers.
Michelle commented, “I share Robby’s story with family and friends who follow me on social media, but to share it with people who don’t know him is really stepping out of my comfort zone. But if I want to be an advocate for those living with epilepsy, I need to be willing to share his story.”
As types of seizures vary from person to person, it is important to be aware and educated on how to respond to an episode. For example, those with epilepsy often carry rescue medication with them and have a medical bracelet with additional information. For Robby, there is a rescue kit in each bag that leaves the house with him.
If you encounter someone having a seizure, stay with them and call for help. Help them to a safe area, lay them on their side and place something under their head but don’t restrict their movement. Make sure their airway is open but don’t put anything in their mouth. Time the seizure and call 911 if it lasts longer than five minutes or if the individual does not return to a normal, alert state.
The Iowa House has passed the Iowa Seizure Safe School Act, that would require schools to train staff members to deal with a student experiencing a seizure. Currently the Epilepsy Foundation of Iowa offers training to anyone interested in seizure recognition and treatment. Family members, daycare providers, anyone, can train over Zoom or in person.
Support Robby and all affected by epilepsy this month and every month by wearing a purple ribbon, learn how to respond to a seizure situation, or donate to an organization to research and find a cure for epilepsy.
An extended version of Robby’s story can be found online at driftlessjournal.com