On September 19th, Gwen was diagnosed with Juvenile Myoclonic Epilepsy. Gwen's new neurologist told us that this type of epilepsy was easy to treat and she would be able to live a normal life. Five days later, on the evening of Sept. 24th, Gwen went into status epilepticus and went into respiratory failure as a result. She was admitted to the PICU at Gillette Children's Hospital and spent nearly 3 days in the PICU and 5 additional days on the neuroscience floor. Gwen dealt with intense seizure activity during much of her stay in the hospital and we spent many moments afraid we were going to lose her.
Gwen spent an additional 1 1/2 weeks recovering at home before attempting to go back to school. Once she went back to school she was only able to attend for 2-3 hours a day, due to seizure activity and other related issues like dizziness and extreme fatigue. Her biggest seizure triggers were discovered to be fatigue and stress, so her school counselor, the school nurse, and her teachers worked to get Gwen onto an abbreviated school schedule and to help eliminate stress at school. She now does not start school until the 2nd hour of the school day, allowing her extra sleep at night, and her teachers are constantly working with her to help keep her on track.
While Gwen does have days at this point where she can attend for a full day on her shortened school schedule, she is still not back to school full-time. This has been due to a variety of things including seizure activity, fatigue, medication side effects (extreme nausea and migraines), and medical appointments. Because of all of these issues, along with her hospitalization and recovery, Gwen has struggled immensely in school this year but her familiy is pursuing ways to get her more help and support at school.
When Gwen was in the hospital her neurologist began to express worry that Gwen does not have Juvenile Myoclonic Epilepsy as originally diagnosed, but instead a rare Progressive Myoclonic Epilepsy. The first round of genetic testing results, as well as Gwen's symptoms, seem to be pointing to Progressive Myoclonic Epilepsy type 7, a type of epilepsy that was just discovered three years ago, although tests are not yet conclusive. More genetic testing has been sent in for other possible causes for the severity of Gwen's symptoms. It could be months before we have a diagnosis.
My sister-in-law, Shana, has not been able to work since Gwen's hospitalization, with the exception of two days, and working will continue to be difficult in the weeks, and possibly months, to come because of everything going on with Gwen's health, her medical appointments, and her shortened school schedule. This leaves their family of six with one working income. Shana is seeking out other work opportunities, probably something that will have her working evenings and weekends, but it may take some time to find a job that will fit with their family's needs.
Because Shana has been unable to contribute to their family's income, and with all of the medical bills starting to come in, they are falling further and further behind. The goal is to get Gwen in at the Mayo Clinic after the first of the year for a second opinion and a hope of answers and relief for our sweet Gwen.
Please consider donating to my brother and his family if you are able. I know we all have our things we support and care about, but any little bit helps and will make all the difference in the World to them as they filter through this new way of life.
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