13-year-old Alyssa just wants to be like her mates – but coping with three types of epilepsy makes that difficult. Thankfully, Satan’s Little Helper was on hand to give Alyssa the confidence to explore her independence.
Alyssa was seven months old when she had her first seizure but it took nearly four more years before a formal diagnosis of epilepsy was made.
“She was diagnosed with three different types: absence (vacant), complex partial, and generalised tonic-clonic,” says her mum Jacinta. “For the first two years, she had frequent hospital stays due to seizures lasting longer than three minutes or times when she’d have more than three in a day.”
An absence seizure causes Alyssa to blank out or stare into space for a few seconds, while a complex partial seizure can last between 30 seconds and two minutes and is the most common type of epilepsy in adults. A generalised tonic-clonic seizure can result in a loss of consciousness and cause convulsions.
Doctors have tried various medications to treat Alyssa’s symptoms without much luck. At one point, Jacinta and her husband Allen made the difficult decision of withdrawing Alyssa from all medication because the side effects were so bad.
“When she was on one particular drug, she wasn’t eating and would have wild personality changes. In general, she just wasn’t a happy girl. So, in consultation with her doctors, we took her off. But that meant she needed 24/7 observation.”
Constantly adapting
Alyssa spent 18 months medication-free before moving on to a new type of medication. That, combined with her growing up, resulted in less frequent seizures – but since Alyssa hit puberty, things have changed again.
“We’ve noticed a dramatic increase in her seizure activity,” explains Jacinta. “At one point, they got so bad that half her face and body was paralysed as a result of seizures that lasted up to six weeks.”
Alyssa was referred to a top pediatric neurologist, who prescribed her a combination of medication that has helped her reduce her frequency and duration of seizures. Surgery is also an option – and it’s a choice the family are seriously considering.
Finding ways to get through it
For now, the main aim is to do something that helps Alyssa live like her mates, reclaim some independence and enjoy her teenage years. One way to do that is via a smartwatch with an epilepsy app called SeizAlarm (which can automatically alert emergency contacts when repetition motion, such as a seizure, or a heart rate outside of a set boundary is detected) – which Satan’s Little Helper was only too happy to help with.
“It’s been really helpful,” says Jacinta. “Firstly, the watch gathers seizure data in the app, such as heart rate, which we can be passed on to her doctor. For example, we noticed that her heart rate spikes by around 100 beats per minute during a seizure, so she is now aware of the warning signs and can be prepared.
“Her watch also has fall detection. So if she had a seizure, fell and hit her head, it would trigger an automatic alert to myself and Allen. It can also call an ambulance if she’s incapacitated.
“It’s given her and us the confidence to allow her to be independent without ‘helicopter parenting’ or being constantly worried about her. She’s now able to go out with her friends and experience some freedom, which has been amazing for her mental health.”
Without surgery, it’s likely that Alyssa will need to manage her epilepsy her whole life. Thankfully, she now has a way to do that more effectively, while also gaining more confidence to live life the way she wants!
Comentários