- M
Saige, 11, our oldest daughter, was recently diagnosed with Primary Generalized Epilepsy w/ Absence and Tonic-Clonic, Fugue State Seizures (PGEAT for short) by the neurology department at Children's Hospital. Epilepsy is likely a life-long diagnosis and, while we’re happy to be on a good path right now, we’re taking things one day at a time. Children’s Hospital has become our stomping ground, in tandem with Epileptologist Dr Patrick Brown located in Minnesota at the Minnesota Children’s Epilepsy center. We've spent a lot of time over the last few months in-patient, as well as well as weekly lab draws, EKGs, MRI imaging, and hospital ER trips, after multiple tonic-clonic (otherwise known as Grand Mal) seizures, myoclonic and absence seizures by the hundreds, every day.
We are happy to report that after four months and multiple medications, we seemed to have found a combination, that is currently allowing Saige to live life day to day here at home. With the right combination of anti-seizure medication to start controlling her episodes, we can start on the road back to normalcy. While this is a long and arduous process, Saige is being unbelievable brave through it all. We are seeing a new psychologist weekly whom is helping Saige with a lot of big feelings surrounding this current challenge, have a new primary care physician who is working alongside her Epileptologist and a fabulous home aid/tutor helping keep Saige up on her schoolwork until 6th grade. She is subdued, not her normal self, but currently willing and able to tackle this head on.
Every year, the Washington Epilepsy Foundation provides a 3-night summer camp called Camp DIscovery for kids diagnosed with epilepsy. Since Saige has been responding to her medication, we’re happy to say that Saige’s neurologist has given his approval and she’s able to attend the camp and spend time with other kids her age that share her condition! Saige is very excited about the possibility of meeting other kids her age who are going through exactly what she is, and enjoy summer camp activities like hiking, swimming, high ropes course, and art therapy - some good kid fun. Camp Discover is being held next month, August, in order to attend, we have to stay within a two-hour drive of the camp’s location.
In order to keep Saige safe during the day and especially at night, we now need to purchase seizure monitors for our home, as well as for Saige herself. Fortunately, modern technology provides amazing options, including wearable monitors and bed sensors. Donations will go toward the purchase of the following, as well as medical expenses, Saige’s medication and travel to and from Camp Discovery.
- Embrace2 Wearable Seizure Monitor: $500 ($249 + $20/month for a year)
https://www.empatica.com/embrace2
This wearable watch-like device is FDA-cleared and uses advanced machine learning to detect possible generalized tonic-clonic seizures, and immediately notifies caregivers. The Embrace2 pairs via Bluetooth to a mobile phone, which automatically calls chose caregivers (Saige's parents) and also provides GPS location and other data via the Embrace Alert App. This monitor requires a $20/month Caregiver plan, but there is also an option to prepay for 12 months, which donations will go toward paying.
- Smartphone: $800 ($200 + $50/month service for a year)
In order to use the Embrace2, the device must be paired with an Android smartphone, which is how it tracks GPS data and contact caregivers.
- EasyLink MP5-UT Bed Monitor: ~$370 + Shipping
https://medpage-ltd.com/epilepsy/epilepsy-bed-seizure-movement-alarm-usa/Irregular-Sleeping-Movement-Detection-Alarm-System-For-USA
To keep Saige safe while sleeping, we will need to install a seizure monitoring system for her bed. This EasyLink monitor is highly recommended by parents of kids diagnosed with epilepsy. It’s This is a UK product so we’ll have to deal with currency rates at the time of purchase, but as of now it translates to about $370.
- Camp Discovery: $1700
https://epilepsywashington.org/camp-discovery/
Now for the fun stuff. The Washington Epilepsy Foundation runs a 4-day, 3-night camp in Auburn, WA for kids ages 7-16 that have been diagnosed with Epilepsy. Saige will be surrounded by a comprehensive medical staff and, more importantly, kids her age that are going through, and have gone through, everything she’s going through regarding her diagnosis. Camp Discovery features activities such as rock climbing, high ropes course, swimming, Art Therapy, epilepsy informational sessions, and nature hikes. Cost includes travel, lodging for the rest of the family, food, etc.
We appreciate the donations we’ve received more than we can express! Hopefully we’ll be able to raise enough to get Saige to Camp Discover this summer!
Please feel free to contact us via email, Facebook, or phone if you have any questions.
Ryan and Brittany Weaver
We are happy to report that after four months and multiple medications, we seemed to have found a combination, that is currently allowing Saige to live life day to day here at home. With the right combination of anti-seizure medication to start controlling her episodes, we can start on the road back to normalcy. While this is a long and arduous process, Saige is being unbelievable brave through it all. We are seeing a new psychologist weekly whom is helping Saige with a lot of big feelings surrounding this current challenge, have a new primary care physician who is working alongside her Epileptologist and a fabulous home aid/tutor helping keep Saige up on her schoolwork until 6th grade. She is subdued, not her normal self, but currently willing and able to tackle this head on.
Every year, the Washington Epilepsy Foundation provides a 3-night summer camp called Camp DIscovery for kids diagnosed with epilepsy. Since Saige has been responding to her medication, we’re happy to say that Saige’s neurologist has given his approval and she’s able to attend the camp and spend time with other kids her age that share her condition! Saige is very excited about the possibility of meeting other kids her age who are going through exactly what she is, and enjoy summer camp activities like hiking, swimming, high ropes course, and art therapy - some good kid fun. Camp Discover is being held next month, August, in order to attend, we have to stay within a two-hour drive of the camp’s location.
In order to keep Saige safe during the day and especially at night, we now need to purchase seizure monitors for our home, as well as for Saige herself. Fortunately, modern technology provides amazing options, including wearable monitors and bed sensors. Donations will go toward the purchase of the following, as well as medical expenses, Saige’s medication and travel to and from Camp Discovery.
- Embrace2 Wearable Seizure Monitor: $500 ($249 + $20/month for a year)
https://www.empatica.com/embrace2
This wearable watch-like device is FDA-cleared and uses advanced machine learning to detect possible generalized tonic-clonic seizures, and immediately notifies caregivers. The Embrace2 pairs via Bluetooth to a mobile phone, which automatically calls chose caregivers (Saige's parents) and also provides GPS location and other data via the Embrace Alert App. This monitor requires a $20/month Caregiver plan, but there is also an option to prepay for 12 months, which donations will go toward paying.
- Smartphone: $800 ($200 + $50/month service for a year)
In order to use the Embrace2, the device must be paired with an Android smartphone, which is how it tracks GPS data and contact caregivers.
- EasyLink MP5-UT Bed Monitor: ~$370 + Shipping
https://medpage-ltd.com/epilepsy/epilepsy-bed-seizure-movement-alarm-usa/Irregular-Sleeping-Movement-Detection-Alarm-System-For-USA
To keep Saige safe while sleeping, we will need to install a seizure monitoring system for her bed. This EasyLink monitor is highly recommended by parents of kids diagnosed with epilepsy. It’s This is a UK product so we’ll have to deal with currency rates at the time of purchase, but as of now it translates to about $370.
- Camp Discovery: $1700
https://epilepsywashington.org/camp-discovery/
Now for the fun stuff. The Washington Epilepsy Foundation runs a 4-day, 3-night camp in Auburn, WA for kids ages 7-16 that have been diagnosed with Epilepsy. Saige will be surrounded by a comprehensive medical staff and, more importantly, kids her age that are going through, and have gone through, everything she’s going through regarding her diagnosis. Camp Discovery features activities such as rock climbing, high ropes course, swimming, Art Therapy, epilepsy informational sessions, and nature hikes. Cost includes travel, lodging for the rest of the family, food, etc.
We appreciate the donations we’ve received more than we can express! Hopefully we’ll be able to raise enough to get Saige to Camp Discover this summer!
Please feel free to contact us via email, Facebook, or phone if you have any questions.
Ryan and Brittany Weaver