During her quarantine last year, as her children came home from school, Katie Kraft noticed that her second child, Otto, was going to collapse.
Over the summer he collapsed and hit his head against something hard, and the Homewood family realized something was wrong but didn’t know what it was, a- she declared.
“It was very difficult,” Kraft said. “We didn’t have a very good understanding of what was going on.
When told about epileptic seizures, which last for a short time and cause loss of muscle control, the Kraft were told it was rare and didn’t think this was how Otto felt, a she declared.
In early August 2020, Otto suffered a tonic-clonic seizure, also known as the Grand mal seizure, which causes violent muscle contractions and loss of consciousness.
“It was absolutely terrifying,” Kraft said. “William [her husband] shouted for me. He [Otto] was seized with the flu and did not respond. … He had this period where he was just completely limp.
The family eventually ended up in Alabama Children’s Hospital under the care of “absolutely amazing” neurologists, Kraft said. Otto received a long-term EEG, a test that measures brain waves, and doctors found he was having yet another type of seizure while he was asleep.
After diagnosing Otto had epilepsy, doctors put him on medication, which kept him from having seizures for over a year, Kraft said.
“It took us months to stop thinking about it all the time,” she said.
The Kraft family had to discuss whether Otto could do things like play on the playground or swim, or even get in a car, Kraft said. They also received training on foreclosures and developed an action plan.
“The unexpected… has been a huge adjustment for us,” Kraft said. “The most important thing was to feel that we had no control. “
Fortunately, with the continuation of the drugs and positive advances, there is a “pretty good chance” that Otto could come out of crises, Kraft said.
The family gave Otto’s teachers and principals a plan for what to do if he had a seizure at school, Kraft said. Most seizures do not require calling 911 because the danger of seizures has more to do with what happens after the seizure, such as falling and hitting your head, than the seizure itself.
Otto needs a second year without any seizures to start weaning off his medication, Kraft said. Then he will do another EEG to see if there is any seizure activity without the drug.
“This is all difficult and stressful,” Kraft said.
While there are generally concerns about side effects, such as lethargy, associated with Otto’s medications, Kraft said they have not experienced any such experience.
The family are fortunate to have a great support system, including family, friends and neighbors who have stepped in to help other children and in other ways, Kraft said. The family was also supported by God and spent a lot of time praying, she said.
The Epilepsy Foundation Alabama group also played a key role in supporting the family, Kraft said. “They actually have all the resources.”
The family is especially grateful for the training in first aid and epileptic seizures.
“It was stimulating in a lot of ways,” Kraft said.
Learning about the different types of seizures was also helpful as she was unaware that there were more than one type until she experienced this situation with her son, she said.
“Having this confidence that I was ready and prepared for the unexpected was the only thing that gave us some control back,” Kraft said.
People need to understand how common epilepsy is and how many there are, but also not to “panic,” especially if they have a great support system, she said.
“This person needs to know that there are people who are going to handle things while a crisis is happening,” Kraft said.
The key is to have people come together to help, she said.
Sara Franklin, the Epilepsy Foundation’s executive director of community engagement and partnership for Alabama, Mississippi and Louisiana, said knowing how to help someone during a crisis can make a difference and save a life. life.
“While there are many types of seizures, during most of them a person may be confused, unaware of what is happening, or unconscious,” Franklin said. “A person could injure themselves during a seizure, or a seizure could last too long, or the seizures could cluster together. “
Franklin said that one in 10 people will have a seizure at some point in their life and one in 26 will be diagnosed with epilepsy.
The foundation seeks to help end epilepsy in the state by: connecting people with treatment, support and resources; lead advocacy efforts; fund innovative research and the training of specialists; and educating the public about epilepsy and first aid for epilepsy, Franklin said.
The foundation also offers a way for people to become “certified in crisis first aid” by visiting learn.epilepsy.com. The certification is intended for people who have a family member, loved one or friend suffering from seizures, who have a job caring for people who have seizures, who work with the public or who work with a someone who has seizures, or someone who coaches or leads groups, Franklin said.
Walking to end epilepsy
OR: Railway park in Birmingham
WHEN: Saturday, November 6, registration at 10 a.m. walk at 11 a.m.
COST: Free, but participants are welcome to donate or fundraise
THE WEB: walktoendepilepsy.org/birmingham
Walking to end epilepsy
The group’s big annual fundraiser, the Walk to End Epilepsy, is scheduled for Saturday, November 6 at Railroad Park in Birmingham city center.
Registration for the approximately one mile walk around the park will begin at 10 a.m. and the walk is expected to begin at 11 a.m.
The event aims to raise awareness about epilepsy but also to raise funds. There is no mandatory fee to participate. Instead, individuals and teams are asking people to sponsor them into the walk with donations to help support research and services for people with the disease.
The first Walk to End Epilepsy in 2018 attracted about 200 people and raised about $ 13,700, Franklin said. The following year, 700 to 800 people went out and raised $ 68,000. Last year, the walk went virtual due to the pandemic and raised a record $ 93,000, she said. The goal this year is $ 100,000.
By the end of September, 37 teams of 216 people had registered and nearly $ 55,000 had been pledged or raised, according to the Birmingham March website. People with epilepsy and people who raise $ 50 or more receive a free t-shirt.
Although this year’s walk is again a group walk, the venue is large enough to allow for social distancing, and there will be hand sanitizer stations, organizers said. Additionally, organizers say they will monitor COVID-19 guidelines from the United States Centers for Disease Control and Prevention and state and local authorities and make any necessary adjustments.
To register individually or as a team, or for more information, go to walktoendepilepsy.org/birmingham.
For more information on the foundation, visit epilepsyalabama.org.