When Emma Johnston steps onto 9 Northwest at Boston Children’s Hospital on a recent Friday afternoon, she’s like a celebrity surrounded by her fans. Nurses come out in droves with big hugs and warm smiles to greet the 13-year-old. They all know her. They have all cared for her, some since she was a baby.
Emma’s been a familiar face at Boston Children’s since her first seizure, at 7 weeks. Since that time, the nurses on 9 Northwest have made her feel special whenever she’s here.
Genetic mutation causes difficult seizures
Although Emma has gone for long periods of time without seizures, they have become more difficult to control in the past two and half years. Last November, after testing at the Boston Children’s Epilepsy Genetics Program, her family discovered why this might be the case: Emma has a very rare SCN8A gene mutation. Kids with this type of mutation have seizures that are notoriously hard to treat. …
In honor of Epilepsy Awareness Month, some of the nurses and social workers who support the Boston Children’s Hospital Epilepsy Center share their top epilepsy tips.
Chris’s tip: Get support!
Chris Ryan, LCSW, recommends that you consider therapy for your child or family — or both. Kids with epilepsy are at higher risk for behavioral and mental health conditions, like anxiety, depression and attention-deficit/hyperactivity disorder (ADHD). They may also struggle with the lifestyle restrictions epilepsy can cause. A therapist can help your child learn to cope with these conditions.
Chris says joining a support group can also help kids with epilepsy — and their families — learn how to adjust to living with epilepsy. …