Bret

Bret

BRET Seizures MY NAME IS BRET. THIS IS MY STORY. Our son Bret was born full term after an uneventful pregnancy on March 17, 1996. During his first week he became jaundiced (not sure if that’s the correct way to state it), and a week later we took him to the hospital when he was unresponsive after taking an unusually long nap. A spinal tap was performed, showing some type of infection; and antibiotics were administered before we were sent home. Bret missed all of the typical milestones; turning over, sitting up, eye contact. His pediatrician kept telling us he was fine, but we knew (really, his mother knew from the start) he wasn’t developing as a typical child. Every doctor we took him to said he was just delayed, but they were confident all would be okay. Angie kept insisting we find a doctor willing to listen to us, and finally, when Bret was about 10 months old, we found a doctor who agreed he was not progressing typically.  We immediately began physical, occupational and speech therapies, which continued for the next 14 years.    We became consumed in trying to figure out why Bret was not progressing, and what “diagnoses” could be found . We joined support groups, sought out doctors in different cities. It was a tough juggling act, as Bret was the youngest of three children, and his older siblings also needed attention, not to mention I had a small business to run. Angie stopped working, and made our children her full time job. She enrolled Bret in Babies Can’t Wait, and other government funded...
Jacob B

Jacob B

JACOB Doose Syndrome MY NAME IS JACOB. THIS IS MY STORY. November of 2001, Jacob entered this world, a healthy baby boy. His first few years were full of smiles and met milestones. That all changed in May of 2006. It started with a fever that ranged from 104-105 and lasted 7 days. It was difficult to bring down, and we found ourselves in the ER twice that week. They ran a battery of tests, with no explanation. Within a few weeks, he started falling backwards. His doctor referred him to a pediatric neurologist, who made the seizure diagnosis. Four years later, after genetic testing, CAT scan, MRI, metabolic testing, and more EEGs, he was diagnosed with Doose Syndrome, a rare and severe form of epilepsy. We made the trip from Atlanta to Johns Hopkins in Maryland for this diagnosis because we were desperate for answers. At that point, he wore a helmet every waking moment because the abrupt, drop seizures were so frequent and unpredictable. He started on the Modified Atkins diet, and later switched to an extremely difficult Ketogenic diet. For every gram of carbohydrate and protein combined, he must consume 3 grams of fat. Every gram of food is weighed daily, and his carbohydrate intake is severely restricted. He has done this for almost five years. He longs for the day he can eat without restrictions. He also takes three different harsh pharmaceuticals daily, along with many other supplements. Despite all of this, his last EEG revealed more than 168 seizures within a 48 hour time span. He has tried every medicine possible for his condition....
Zac

Zac

ZAC Seizures MY NAME IS ZAC. THIS IS MY STORY. Zac is 13 years old and suffers from complex partial seizures. He was diagnosed 7 years ago. He has spent the majority of those years undergoing tests and doctor visits to find a cure for his seizures. Three years ago, Zac was able to have surgery to resect several congenital lesions to help his seizures. The surgery helped reduce the frequency of his seizures, but was not a cure. Currently, his only option is to continue his twice daily, three medication drug therapy to control seizures. These drugs have many adverse side effects that hinder several aspects of his daily life. We feel cannabis oil may be a safer, more natural way to heal his body. Our hope and Zac’s hope is to one day be seizure free! READ MORE STORIES Want to become a part of the movement? Get...
Cohen

Cohen

COHEN Lennox Gastout Syndrome MY NAME IS COHEN. THIS IS MY STORY. This is our courageous 2 year old son Cohen. My pregnacy was uneventful, so we thought everything was fine. Little did we know that on November 18, 2012, our whole world would change. Cohen was born in respiratory distress due to meconium aspiration. My husband and I were told that this does happen from time to time, but the pediatric doctor did want to transfer him from the hospital in Americus to the NICU in Albany for closer specialized observation. He spent (what I thought at the time) the slowest 8 days in the hospital. My husband, Andrew, 9 year old son, Carter, and I were so happy when we were able to bring our newest addition home, and start being a family. Fast forward to now, after over 200 days, off and on, being at the Children’s Hospital in Macon, mostly for respiratory issues, on the vent 3 times, multiple tests, and many nights praying that Cohen would have the strength to keep fighting, we still do not have many answers as to why he has these problems. Cohen has Lennox Gastout Syndrome, chronic lung disease (which is a double whammy), vision impairment, developmentally delayed (can’t sit up, crawl, walk, talk etc..about 0-4 mth level), GERD, has a g tube because he can’t suck or swallow, hypotonia, just to name a few diagnoses. The root to all these issues is currently undiagnosed. He currently takes 3 meds for his seizures, which was diagnosed when he was 15 months old. However, since birth he has jerked a...
Michala

Michala

MICHALA Aicardi Syndrome MY NAME IS MICHALA. THIS IS MY STORY. Our daughter Michala had her first seizure when she was 3 weeks old. The next morning we took her to Children’s Healthcare of Atlanta for her first EEG. We were told she was indeed having seizures and she was started on Phenobarbital. For days we couldn’t get her to wake up because she was so sedated from the medication. Within a week she began having infantile spasms. Most of her day was filled with hundreds of seizures. When she was two months old she had an MRI. We were told that they thought she had Aicardi Syndrome. Later that day the opthamologist confirmed the diagnosis. While she was having pictures taken of her eyes she was having violent seizures. Michala’s neurologist got her into a drug study in Alabama. We drove her back and forth each week to University of Alabama Birmingham to give her this non FDA approved medication. We knew the risk of trying this medication but in the time Michala had started having seizures she stopped smiling and cooing. We were losing our baby. Michala continued to have seizures daily. The only time she didn’t was when she was going through chemotherapy for Angiosarcoma cancer, that she was diagnosed with when she was a year old. As she got older her seizures changed, progressed and continued to get worse. We attempted to help control or decrease the strength and frequency of her seizures by changing doses of her seizure medications and adding new ones. Some of the medications helped, some only for a short amount...