In 2015 Nehe had 40 to 100 seizures a day, 12 ambulance rides and 6 extended hospital stays. We went through the entire rigmarole, doctor switches, insurance headaches, drug after drug after drug, until we connected with the Los Angeles Epilepsy Foundation! After our third ambulance ride and immediate discharge yet again with no answers, I reached out to the president of the epilepsy foundation, wow, what a difference a phone call makes! Within twenty minutes of calling her I went from signing discharge papers to being admitted for the necessary testing and Nehe became a patient of one of the top Pediatric Epileptologists in the country. Nehe’s health continued to be rocky even after receiving top of the line medical care. In June 2015 Nehe seized uncontrollably in the hospital for SIX LONG DAYS, he was catatonic, and we were afraid we would never see our Nehe again. In day six of that hospital stay we started the Ketogenic diet (a diet high in fat clinically proven to stop seizures). We stayed in the hospital four more days as the hospital observed how he took to the diet and the hospital staff trained us on how to prepare his food. It was a rough start and a major change to our lifestyle, but like any parent we were willing to do anything to make the SEIZURES STOP! After six long months of tweaking the diet and weaning him off the drugs that failed him we achieved SEIZURE FREEDOM! Nehe’s last seizure (knock on wood) was December 31, 2015. We are thrilled to report that 2016 and 2017 have been seizure free, all from feeding Nehe butter, oil and cream!!! (CRAZY BUT TRUE!)
Through the whole journey of 2015, the Los Angeles Epilepsy foundation was by our side every step of the way, making phone calls for us to battle insurance, hospitals and pharmacies, connecting us to the leaders in the ketogenic diet industry, providing seizure trainings for his school and providing emotional support for our family. We are ecstatic that with their help we have ENDed Nehe's epilepsy. But it is NOT enough. We will not stop sharing our story and raising funds until we have ENDed ALL EPILEPSIES. We would love for you to help us in this fight! We want to help others END EPILEPSY!!!!!!! Your donations fund research, family support, seziure trainings, epileptologists and so much more. We appreciate you visiting our page and we look forward to seeing you at the Walk on November 5, 2017!!!