by Jonathan Smith | Jan 7, 2015 |
ANSLEY GRACE Undiagnosed Seizures MY NAME IS ANSLEY GRACE. THIS IS MY STORY. Hi. My name is Ansley Grace and I am two years old. At birth, I was a normal, seemingly healthy, positively beautiful bundle of joy! In fact, during my first check-up at the pediatrician’s office, the doctor said I was absolutely perfect and exactly the way they order each and every baby. Just a few weeks later, when I was 3 ½ weeks old, I had my first seizure in the middle of the night. My parents rushed me to Children’s Healthcare of Atlanta-Scottish Rite. The doctors there gave me a dose of Phenobarbital, which stopped the seizures that I was having. They did an MRI and an EEG…both were normal. They sent me home on a low dose of Keppra. After about two weeks of being seizure free, we all thought my little issue was going to be nothing more than a tiny bump in my life’s road. The next few months of hospitalization after hospitalization made us realize that the tiny bump was more of a mountain. I kept having seizures despite tweaks in my medications and dosages. When I was 4 ½ months old, we spent 9 weeks at a children’s hospital in Tennessee, seeing one of the best pediatric neurologists in the US. As we prepared to leave for home after that long stay, the doctor told my parents that I only had weeks or months to live. My parents didn’t believe that for one second, though, because I have so much fight in me. My parents took me to see another...
by Jonathan Smith | Dec 31, 2014 |
ASHLEIGH Lennox Gastaut Syndrome MY NAME IS ASHLEIGH. THIS IS MY STORY. Hi everyone, my name is Ashleigh Rowe and I’m 15 years old. Mama and Daddy say I’m the toughest person they know. I think that’s a good thing, but Mama says she wishes I didn’t have to be so tough. I have Lennox Gastaut Syndrome, that’s something that makes me have lots of seizures. I’ve had those seizures pretty much all my life, but I try not to let them get me down. Doctors said I’d never walk or talk. One even told Mama and Daddy they should just give up trying to help me and just accept things the way they were. You should have seen his face when I walked into the office one day! I may have been 7 years old when I learned to walk, but I never gave up. I kept working at it with Mama, Daddy, and my therapists until I got it! I think Mama and Daddy must be pretty tough too. I know my seizures hurt them. I can see it in their eyes and on their faces. I think they get pretty scared sometimes, but they never stop trying to help me. That’s why this summer, with the help of Journey of Hope, we moved to Colorado. They have a special medicine here that I wasn’t able to get back home in Georgia. So far I’ve been on the medicine for 5 weeks. I still have seizures on this new medicine, but I’m not having as many. I’ve even had 7 whole days when I didn’t have one...
by Jonathan Smith | Dec 31, 2014 |
DYLAN Epilepsy MY NAME IS DYLAN. THIS IS MY STORY. Hello everyone! My name is Laura McNamara. My son Dylan is 8 years old and he was diagnosed with infantile spasms/epilepsy at 3 weeks old. After many tests, it was finally determined that his seizures were caused by several brain malformations. Like many other epilepsy patients, Dylan was tried on many medications before finally finding the two that worked for him. He still had seizures but he could go for months at a time without any at all. Unfortunately, Dylan wasn’t progressing at all. He never crawled, rolled, walked, or talked. It was suggested to us at two years of age to think about brain surgery. We decided to do it so Dylan had the majority of the left side of his brain removed in 2008. He was doing great after the surgery. He started scooting around the floor on his butt, and he was very alert while watching Elmo and playing with his toys. He always bounced around while listening to music and he loved playing with his family. He would even bear weight on his legs while being held. Then in 2010 he just stopped sitting up completely and it seemed liked certain motions scared him. He went in for a CT scan and they said the cause was hydrocephalus. He went to get a shunt but the surgeon thought he had fixed the draining problem during surgery and felt the shunt wasn’t necessary. Dylan did seem to feel better and he had been two years seizure free. All was well again with seizure control but Dylan...
by Jonathan Smith | Dec 31, 2014 |
ELLISON Epilepsy and Cerebral Palsy MY NAME IS ELLISON. THIS IS MY STORY. This is Ellison Olinger. She is 15 months old and has the sweetest spirit and smile!! We are so blessed that she is here and she is our everything!! Ellison was born 3 weeks early with Subgaleal and Cephalhematomas and suffered a brain injury during birth. She has Hypoxic Ischemic Encephalopathy, Periventricular Leukomalacia, Microcephaly, Cortical Vision Impairment, Seizure Disorder (Generalized Clonic & Infantile Spasms), feeding difficulties (has a G-Tube), Infantile Cerebral Palsy, & Developmental Delay. Ellison had her first seizure at 3 days old and was put on Phenobarbital, which she has been weaned off of. She has also been on Klonopin & weaned off and is currently being weaned off Topamax. She is still taking Sabril, which has been the only medication to help with her seizures, going from 75 to 20-40 daily, and is going to start Onfi along with it. Seizures ruin everything and along with worrying about the medication side effects, they also make her tired. Every seizure she has throughout the day is a step back and hers can be caused by the simplest things – a noise, picking her up, wiping her face, putting her paci in, etc. It’s heartbreaking that she has to go through this, her seizures are not in one spot of the brain, but all over. Her neurologist wants her to have the best quality of life in trying to control the seizures with meds, but we think her best option will be Cannabis. How many prescription drugs are we going to have to try, to...
by Jonathan Smith | Dec 31, 2014 |
AVA Epilepsy MY NAME IS AVA. THIS IS MY STORY. I love how this photo captured our Ava, our sweet, sensitive, gorgeous girl. The one we see from time to time. The one not ‘under the influence’ of her daily anti-seizure meds. This is what I want for her for EVERY DAY. Ava is eight years old. Her first seizure was when she was three years old. Up until this point Ava was progressing ahead of her peers and we were in denial that there could be ‘something wrong’ with our child. The same day as her first EEG she was diagnosed with Epilepsy and began medication. Then a different medication, then another…. and another…. She was referred to Duke University Hospital for treatment. Ava was diagnosed with brain dysplasia, a condition that causes epileptic seizures. We spent two weeks inpatient at Duke University Hospital for testing to determine if Ava was a candidate for brain surgery. The tests revealed Ava’s seizures were coming from too many different parts of her brain to make surgery a viable option. We had an EEG done this fall in Atlanta and as I was sitting there with Ava for an hour, I never saw anything. The doctor called later with results and said Ava was having seizures the entire time we were there. Ava has since been diagnosed with intractable epilepsy which means anti seizure medications are unlikely to help her see seizure free days. Ava is now on her seventh medication to control the seizures and it’s not working. The hold-out hope for Ava is cannabis oil. It’s illegal in Georgia. Can you imagine me sitting here talking to...
