Motivating, and Suffering: My Summary of American Epilepsy Society 2013 Annual Meeting

Visiting the Texas Christmas Tree during AES 2013 in Washington, DC

Motivating information, yet Harper and kids like her suffer still

As motivating as the information obtained from the American Epilepsy Society 2013 Annual Meeting was it brings to light the realization that we have a long way to go. And the fact that we have been doing all we know to do for Harper for the past three and a half years and she still suffers everyday. Epilepsy research has come a long way since the creation of the American Epilepsy Society in 1936. From 1847 to now we have 40 AEDs 16 of which were approved since 1993. In the last 30 years we have the approval of the VNS and RNS as of 2013.

Clearly it is neither awareness alone nor money alone that will cure Epilepsy.

The question remains will Harper’s seizures from CDKL5 be resolved within her lifetime?

Our experience with Harper on a daily basis is teaching us that quality of life/living with side effects is much more important than the worry of seizure reoccurrence. “To Treat or Not to Treat” is a running theme at this years conference.

Thank God for technology! The reason I go to AES is the hope of learning something that can make their life better, literally! To help figure out how to help Harper function better so Lily won’t carry such a burden in life.

Answering questions about epilepsy in the medical community

The definition of Epilepsy alone is a struggle to agree upon in the medical community. Clearly CDKL5 carries with it Epilepsy by any definition. It’s not a mental disorder but because it affects the brain it has a stigma that will not be eliminated without awareness. I spoke with a lady who said her grandson has seizures and takes medication for control and was completely unaware that meant he has Epilepsy. In the beginning of our struggles with Harper, prior to her CDKL5 diagnosis I too remember thinking, “thank goodness she just has a seizure disorder and not Epilepsy!” I just did not know enough to understand a seizure disorder is Epilepsy! Schools from a very young age have Red Ribbon say no to drug week, Pink Cancer week but never had I heard facts about Epilepsy until Harper.

What I learned in relation to the above?

Diagnosis is important before treatment should be decided. Thanks to genetics, new genes related to epilepsy are being discovered.

Neuroengineering is a severely underemphasized field.

Possible Future Devices to Control Epilepsy

The ability to predict a seizure could close the loop between seizure and prevention of the seizure.

Seizure Alert Systems, shake detectors such as the seizure watch. Recently their product did not miss a single seizure in trial with minimal false negatives.

Seizure Prediction- a pager device that can be implanted and will beep to warn you when a seiure will happen. In the evaluation of this device there were some false negatives but no false positives.

Cooling – Cooling of the brain from electicity by an implant. However, only the top folds of the brain are able to be cooled.

Optical Control- controlling the brain excitability by fiber optics. Implantation of a Bacteria has a gene for light sensitivity which makes the brain sensitive to colors of light. Is this feasible? It’s double invasive. Although this option is questionable now, the opportunity for seizure control is very high with such device.