Morgan had her first seizure 9 hours after her 4 month DTaP vaccine on election day, November 6, 2012, at 9:32 pm. We were rushed to a local hospital, transferred to a Children's Hospital where we stayed overnight, had numerous tests and was told it was a febrile seizure and she would likely never have another. A month later she had another one, and three days after that, another. After her third seizure, we were sent home from Children's Hospital with Keppra and were referred to a local neurologist. The neurologist said she would like to test Morgan for epilepsy, never indicating her underlying fear.

Our daughter experienced her first generalized tonic seizure at five months old. A subsequent status seizure two weeks later resulted in a life flight from our local hospital to pediatric ICU 60 miles away. Driving silently below the helicopter’s path, my husband and I prayed she would be with us when we arrived to meet her. We arrived to find our beautiful 10-pound baby girl hooked up to more life support than we had ever seen. Thankfully, she recovered and was sent home with us five days later, but the challenges were just beginning. Our life became consumed by generalized tonic clonic seizures which often progressed into status seizures requiring emergency room intervention. Despite the heroics of multiple pediatric neurologist and specialty physicians, standard anticonvulsant treatments continued to fail, and months turned into years. 

Giovanni was born on May 22, 1999. At three months old he developed Infantile Spasms; he was having seizures that we could see, but he was also having seizures that we couldn’t see. He was started on Phenobarbital and Tegratol. Unfortunately, they were not successful in controlling his seizures. After nine months and no improvement, I took him to Stanford Hospital where they gave us more drug options and prescribed Topamax. After starting Topamax, within one week his seizures were gone. Eventually, Giovanni was able to wean off all the medicine when he was four years old and stayed off until he was seven. However, on March 16, 2013, our lives changed forever when Giovanni had his worst seizure ever; he was unconscious, having back to back seizures and stopped breathing numerous times. 

Mia is 4 years old and has been diagnosed with Dravet Syndrome. She has tried numerous meds and ketogenic diet without success and is still currently on Depakote, Clonazepam, Topomax and Fycompa. Despite all of these meds her seizures were still not controlled. She was having grand mals every week that were landing us in the emergency room or giving rescue meds. 

After 3 miscarriages and 12 years of marriage, my husband Richard and I became pregnant with Olivia. At three months gestation, the OBGYN spotted a potential concern with her brain development and recommended a more specialized ultrasound test. Olivia was diagnosed with Hydrocephalus in Utero and was scheduled to have brain surgery the day after birth when a shunt was going to be inserted to relieve the pressure from her brain. Olivia was born via C-Section without any complications and despite what the doctors were telling us, we held her in our arms and to us, she looked like a perfectly healthy baby girl.

Our 10-year-old son was diagnosed with epilepsy in September 2014. We had no idea he was having seizures as we had never seen one. He was diagnosed with partial complex seizures that present as Absence in the language center of the brain. We think he had been having them for at least two years prior to his diagnosis. In the nine months that followed his diagnosis, we tried four different anti-seizure medications and none worked to reduce his seizures. In fact, we felt they made him feel awful and contributed to his rise in volatile and aggressive behaviors which culminated in a six-day stay in a psychiatric ward, all the while, we were utterly baffled as to what was going on with him. Two months later, we received a diagnosis of a genetic mutation called MTHFR, which obstructs his methylation, which is why the anti-seizure medications had the awful reaction they did. He also has autism and speech apraxia diagnoses, OCD, incredible anxiety and doesn’t sleep well. 

My son’s name is Bobby.  He is on the autistic spectrum, diagnosed at age 8, and he’s 21 now.  We’ve done all sorts of biomedical interventions with greater & lesser degrees of success. The second half of last year Bobby underwent HBOT (hyperbaric oxygen treatment) which was an intervention I’d heard wonderful things about for years and had been waiting to try.  Unfortunately, as with many things, there’s a small percentage of people who respond negatively to it; and Bobby was one of those with an adverse reaction. 

Meet four-year-old Isaias Lopez. When Isaias was 17 months old he began having multiple types of seizures that continued for weeks. Months later and after several tests he was diagnosed with Dravet Syndrome, an intractable form of epilepsy that does not respond to traditional anti-epileptic drugs (AEDs). After four medications and the Ketogenic diet, Isaias still suffered from 100’s of myoclonic, atonic and absence seizures a day.  His quality of life was not that of a typical toddler.  Isaias often stayed home and indoors. He wasn’t able to attend parties, family events or even simple trips to the grocery store. Isaias’ story on PBS Last Year.