My big takeaways from the PAME meeting regarding SUDEP and epilepsy related death (Vanesssa Vogel-Farley):
*Any changes to your dupers medical care/medical diet/interventions should be discussed with your physician.
The conference focused on Sudden Unexpected Death in Epilepsy as well as other epilepsy related causes of death (status epilepticus, drowning, accidents, suicide, etc).
Audio/video monitors were discussed at length as one of the biggest recommendations for SUDEP prevention. They cited several studies that looked at intervention during the seizure state or rescue resuscitation (CPR) immediately following the event.
Room sharing-this goes along the lines of monitoring and quick intervention when needed.
Keeping Seizures controlled/Make sure to not miss a dose of anti-epileptics
Make sure caregivers are trained in CPR.
Optimizing seizure control as the risk for SUDEP increases with uncontrolled or frequent seizures.
TALK ABOUT SUDEP AND MORTALITY IN EPILEPSY WITH YOUR NEUROLOGIST, EARLY, OFTEN!
From the families who presented who has lost a child to epilepsy, the lack of education/discussion about epilepsy related death was the biggest downfall of the clinical care process. There were many neruologists present as part of their continuing education, which is promising, but education needs to continue for all doctors.
Mouse models of SUDEP are enabling researchers to seek out answers around SUDEP and other epilepsy related deaths. Mechanism theories: Cardiorespiratory abnormalities couple with epilepsy can lead to an increased risk of SUDEP. Those with generalized tonic-clonic epilepsy are at greater risk. Later age seizure onset is also a risk factor.
In both human and animal studies, resuscitation efforts quickly after the seizure event, SUDEP was prevented, however there were cases that even immediate intervention did not prevent death.
Ketogenic diet (Low GI diets): Medication resistant epilepsy was discussed and the ability of the ketogenic diet in some cases to decrease/alleviate seizures entirely. There was also evidence given that the ketogenic diet may help with cardiorespiratory regulation.
Seizure safety was also highlighted since the other big cause of death in those with seizures is accidents.
Water safety, especially as we are coming in to the summer months, making sure that caregivers are trained in water safety with regards to seizures. Using flotation devices that ensure the person remains face-up in the event a seizure happens in water. Ensure the flotation device fits properly.
Ensure meds are still given on the proper schedule during vacations/other times family schedules change.
Wearing safety head gear in cases where the person with epilepsy has a need.
Mentioned as well:
Vitamins- when on many antiepileptics patients should also be taking vitamins. Consult with your neurologist on vitamin type recommendations.
Genearl Important Recommendations for the Dup15q Alliance Community:
With a diagnosis of dup15q and its connection with seizures, getting in to see a neurologist is recommended if possible even if seizures are not (yet) present.
This supports families in multiple ways,
You can get an EEG baseline prior to any onset of seizures,
If seizures do onset, your family is already under the care of a neurologist that can be called upon.
There is also a chance that you may catch underlying spiking/abnormal EEG activity that can be monitored as your child grows.
Cardiorespiratory (Breathing, apnea, heart function):
Since seizures have a relationship with heart function and breathing, if your child is having seizures, an EKG and sleep study was recommended.