Monday, 07 February 2011 10:18
Our Story
The Charlie Foundation was established in 1994 in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy. The modern success of the diet has led to new demands on the medical community. In order to meet these demands, the Charlie Foundation has expanded its priorities to include educational programs for dietitians and neurologists as well as support for clinicians and researchers working to perfect its administration and discover its mechanisms. For over eighty years it has been known and documented by many of this country’s finest medical institutions that after the failure of the first antiepileptic drug the ketogenic diet controls epilepsy in children with…
Monday, 07 February 2011 10:18
Charlie's Story
When I arrived at Johns Hopkins just before Thanksgiving in 1993 I was 20 months old. I weighed about 19 pounds and was taking Dilantin, Felbatol, Tegratol, and transene several times every day. I still had a bandage on the back of my head from when they operated on my brain. I had been having dozens, sometimes as many as a hundred seizures a day for a year. Then Dr. Freeman and Diana Pillas and Mrs. Kelly changed what I ate. My seizures were gone in two days. I was off all those drugs in a month. I’m not sure what would have become of me if my family hadn’t…
Monday, 07 February 2011 10:18
Isaiah's Story
Isaiah is my miracle. Let me tell you his story. Isaiah was born 9 days late, everyone always assumes he was premature because of all of his health problems, but he was a long way from premature. Within the first 2 weeks we knew he had a vision problem. I can't really explain it, but I just knew. I was mistakenly told that a baby needed to be 6 months old or older to test his vision. I waited until he was 7 months old, then found out he had Duane's Retraction Syndrome in his left eye and was very near-sighted. Isaiah's development wasn't keeping up with other babies his…
Monday, 07 February 2011 10:18
Lucy's Story
As of last week Lucy is officially DRUG FREE!! It is a true miracle. It was exactly 1 year ago that Lucy was diagnosed with a severe form of epilepsy (Lennox Gastaut Syndrome) and the prognosis was not very good to say the least. We were desperate. And then Aunt Liz in her endless efforts to help Lucy found the answer on a web site! For the last 7 months, Lucy has been seizure free and we have been slowly reducing her anti-convulsants in hopes that one day we could eliminate them all together! That day came and we were beyond nervous. We stopped her last dose last week and…
Monday, 07 February 2011 10:18
Scott's Story
Scott was diagnosed with Lennox Gastaut Syndrome at age 3. Over the years we tried just about all of the medicines and the medication combo's but nothing worked for long. The seizures continued and became worse. He also went into nonstop seizures a lot regardless of what we tried. After having his jaw broken and several teeth broke below the gumline during a drop seizure that required emergency surgery at age 6, he was started on the ketogenic diet while in the hospital. Less than a week later we were on our way home seizure free for the first time in over 3 years. Within a few weeks though he…
Monday, 07 February 2011 10:18
Katie's Story
Our daughter, Katie (9 years old), loves to swim, ski, read, sing, participate in Irish dance, ballet, and team sports. She lives in Montana with her younger sister, Laura (6 years old), and her mom and dad who work full time. She travels with her family to explore national parks, camp, and visit extended family members. Katie is an incredible person and a spirited adventurer who has epilepsy that has been controlled with the ketogenic diet for the past 5 years. When Katie was just 3.5 years old, she experienced her first tonic clonic seizure; her second followed just one week later. Emergency room doctors started her on an AED,…
Monday, 07 February 2011 10:18
Katie M's Story
Before being treated by Mary Kay Koenig, M.D., an expert in mitochondrial diseases at Memorial Herman Hospital in Houston Texas, five-year-old Katie lived a life of daily seizures, developmental deficits and repeat visits to specialists who had no answers. Just months after beginning treatment for a glucose transporter deficiency, she could talk and run for the first time in her life. Katie’s parents first noticed that she was not developing normally in the fall of 2004, when she was just four months old. “She was my third child, and I knew something wasn’t right,” recalls her mother Keri of Denham Springs, Louisiana. “When I’d put her down, she wanted to…
Monday, 07 February 2011 10:18
Raffi's Story
In December of 2004, our 4 year old son Raffi was diagnosed with a brain tumor. Despite three surgeries and several failed chemo protocols, it was clear that the tumor was winning. Raffi's vision, language and motor skills deteriorated, and a cascade of endocrine problems affected many vital functions. Our little fighter had done everything we asked of him, but he was no match for this opponent. By March of 2007, time was running out. A new direction emerged from research at Boston College. Mouse model studies concluded that a ketogenic diet (KD) had slowed progression of brain tumors by limiting glucose available for tumor growth. There was also evidence…
Monday, 07 February 2011 10:18
Nat's Story
Hello – this is the story of Nat’s journey with Epilepsy and the Ketogenic Diet. Nat was born healthy, and was on pace or ahead of the mark developmentally when he had his first seizure in April of 2007 at 2 years and 7 months old. His second seizure came less than 48 hours later, and by the time we were released from the hospital 10 days later, Nat was having multiple seizures per day. Ten days in, Nat was having tonic-clonic, absence, myoclonic, and atonic seizures, and was already on his third anti-seizure medication combination. The bloodwork, MRI’s and lumbar punctures had revealed nothing, the EEG confirmed generalized epilepsy.…
Monday, 07 February 2011 10:18
Ciara's Story
On January 13, 2005, we were blessed by the birth of our daughter Ciara (Kee-ra), a beautiful, perfect baby born without any obvious health issues. Little did we know that at 5½ months, our world would change forever, marked by Ciara’s first grand mal seizure which lasted 25 minutes. Soon, hundreds of myoclonic jerks per day, prolonged seizures and frequent ER visits became a routine part of her young life. Her diagnosis and battle with Dravet syndrome led to trying seven different types of seizure medications with no improvement. Two days after her second birthday we initiated the Ketogenic Diet at Children’s Memorial Hospital in Chicago. Our hope was that…
Monday, 07 February 2011 10:18
Diana's Story
Once while waiting in Diana’s neurologists’ office, we happened to look at a chart for epileptic drugs hanging on the wall. It soon struck us that Diana had been on about half the 25 drugs listed. Now only six and a half, her seizures started a little over three years ago. That’s an average of 4 different drugs per year. After her seizures began, mono therapy soon became five drugs. Still, she was having seizures – and developing new types that we had never heard of. Atonic. Myoclonic. We were losing her to the drugs, their side effects and the seizures. She often could not walk, eat or play, and…
Monday, 07 February 2011 10:18
Julie's Story
Julie was 10 months old when she was diagnosed with epilepsy. There's nothing more terrifying then watching your child seize, yet we were about to discover something even worse. Julie was prescribed Phenobarbital to control the seizures. I was advised the only side effect was drowsiness. I was unaware that something as simple as a tiny pill would begin a lifetime nightmare. Within 2 weeks of treatment Julie developed blisters and a high fever. Her eyes swelled shut and wouldn't open again for 2 months. She was diagnosed with chicken pox, conjunctivitis, double ear infections and strep throat. She had no exposure to these illnesses. Over the course of the…
Monday, 07 February 2011 10:18
Bryce's Story
My son Bryce was a perfectly normal, healthy boy until he suffered his first seizure shortly after his fourth birthday. I still remember the day vividly. I was at work when the director of his preschool called to tell me. I ran to my car, leaving an office full of patients behind and barely stopping at traffic lights. When I arrived Bryce was post-ictal (the period of confusion that typically follows a seizure). Although I didn’t witness the seizure myself, I knew it was real. He spent the night at our local Children’s Hospital. There Bryce has his first EEG, which was normal except for mild slowing. He had an…
Monday, 07 February 2011 10:18
Belle's Story
Unfortunately, most of our stories have similar beginnings but the important thing is to believe there is hope. I myself turned the diet down at first because it seemed too hard to follow. The Doctor of course supported this decision, even though he had just offered it as an option. He said the diet worked best for children who were severely retarded. A typical child can grab a cookie or cracker and then the diet's effects are done and you have to start all over. This of course I know now is not necessarily true. However, after reviewing all of the available options (medication, ACTH) etc. I could not justify…
Monday, 07 February 2011 10:18
Doug Foster's Story
My battle with epilepsy began suddenly, progressed quickly, and ended abruptly with the help of the ketogenic diet. I was a healthy child, developing normally, until the first seizure occurred when I was three years old. This was just three weeks before Christmas, 1959. During the next two months, two long hospitalizations and five drugs failed to control the seizures. In February, my parents chose to escalate my case to the Mayo Clinic, where I was admitted for a few days and discharged on a new drug regimen. In summarizing my case, the physicians noted that I was a candidate for the ketogenic diet. I was home from Mayo Clinic…
Monday, 07 February 2011 10:18
Zachary's Story
Zach's seizures started at 3 months of age. He started with 3,20 min T/C seizures and came home on medication. I am sure we have the same story as most. We went down the list of medications adding this to that and taking this one away only to add something. I can still remember when he was about 3 reading the book seizures and epilepsy in childhood and going and asking about the ketogenic diet only to be told, "Oh you do not want to that and beside it will not work for Zach". Then when he was 4 the story broke on Date Line Charlie’s story. My phone was…
Monday, 07 February 2011 10:19
Maria Fontini's Story
My story starts in Nicosia - the capitol of a small Mediterranean Greek island called Cyprus. In September, 2002 my one and only child was four months old and had her first seizure. Then after seeing Jim Abrahams movie, "First Do No Harm," we made the big step. We visited the U.S. where my daughter, Maria Fontini, began the ketogenic diet at the Mayo Clinic in Rochester, Minnesota. Epilepsy took my daughter away, the ketogenic diet gave her back to me. This is why The Charlie Foundation was a huge inspiration to me in setting up the Cyprus Association For People With Epilepsy as I felt we needed something like…
Monday, 07 February 2011 10:19
Mathias' Story
Until Mathias was 4 years old he was like any children during play and in development. He learned to ride the bike, climb trees and loved social activities. Mathias has always been a joyful boy with humor and empathy. When he was 4 ½ years old, the kindergarten shared their concern, as they had observed him falling off the chair in a strange way. The kindergarten manager had a child with epilepsy and we were advised to look further into this. Shortly after, he was diagnosed with epilepsy. At that point, any parents’ nightmare started. During the years Mathias has tried 9 different antiepileptic drugs. None gave positive results, and…
Monday, 07 February 2011 10:19
Leah
Leah was 5 months old when she was diagnosed with Infantile Spasms, a catastrophic epilepsy. We treated Leah with the "gold standard" in treatment of infantile spasms, ACTH. For 13 weeks, we endured all the side effects that come along with high dose steroids: weight gain, irritability, nausea, and decreased immunity, to name just a few. We saw our beautiful little girl's delicate face transform into something we barely recognized. Her little legs looked like pin cushions from injecting the medicine, she stopped developing, and she was so uncomfortable all day that all she could do was moan. Worst of all, 6 weeks after ACTH therapy the spasms returned... Fast…
Monday, 07 February 2011 10:19
Mike's Story
Michael was born on his due date, July 4, 1986. Almost immediately he began having seizures due to a grade 3 intraventricular hemorrhage (stroke), which also led to hydrocephalus (water on the brain). His seizures were controlled the first year of life with phenobarbital. The next two years were seizure-free with no treatment. Days before his third birthday, he went into status epilepticus. It was at this point that we started the dizzying three-year cycle of medication, dosage changes, weekly blood tests, CTs, MRIs, doctor appointments, specialists, etc. By the time he was six, he had daily signs of being over-medicated (eyes would cross, abnormal gait, clumsiness, word-finding aphasia) and…
Monday, 07 February 2011 10:19
Haley's Story
Haley is a beautiful little 2 1/2 year old girl with a horrible disease called Infantile Spasms. Haley started seizing at 6 weeks old and was diagnosed at 3 months with Infantile Spasms. She was started on a steroid called ACTH and then 1 month later was taken off of it due to a heart murmur. We then tried 8 other medications that one after another failed to help our little angel, some even caused her to regress significantly in her development. In March of 2009 Haley was diagnosed with a CDKL5 mutation and we were told that the prognosis was not good. Haley started the Keto diet on 6/23/09…
Monday, 07 February 2011 10:19
Lindsey's Story
When my daughter was 10 ½ she had her first episode of status absence seizures, which was misdiagnosed as a condition called “confusional migraine disorder. We did not know it, but this was the beginning of our epilepsy nightmare. She also suffered from migraine headaches, but looking back, I think she was dealing with “feeling bad” from chaining absence seizures. In February of 2000 she had her first tonic-clonic. From that moment on we began to lose my brilliant, organized, witty, beautiful daughter. We ended up trying a myriad of drugs and drug combinations, only to have moderate control with lingering debilitating sided effects. Lindsey’s seizures changed and she began…
Monday, 07 February 2011 10:19
Guinness' Story
Guinness was my baby boy that I dreamed of for over 3 years after a difficult time getting pregnant. He was a sweet baby that wasn't fussy or whiny, but rather relaxed and just a joy to be around. He was completely healthy and normal at birth and was even holding his head up a bit from the very first time we held him. About a week after he was home we saw that his arm on the right side seemed like it had a bit of a tic but the pediatrician shrugged it off due to babies being a bit twitchy from time to time. A few weeks later…
Monday, 07 February 2011 10:19
Stephen's Story
Stephen was playing on this 'Big Boy' bed, so proud to be out of a Crib. My wife sat down next to him to listen as he chattered on about his room, his toys; anything that crossed his mind came across his lips with infectious excitement and enthusiasm. She then noticed his hand jerk and the side of his face twitch. Stephen's speech became garbled and there was a look of confusion in his eyes. This first seizure at age 3 was to be the start of a heart-breaking 6-year journey that essentially ended 48 hours after he went onto the Ketogenic Diet. Had we ignored the high-browed medical 'professionals'…
Monday, 07 February 2011 10:19
Max's Story
Today, Max is an active, friendly fun-loving four-year-old boy. He loves to be outdoors playing with trucks, climbing at the park, riding his bike, swimming and socializing with his friends. He also enjoys joking with people, telling stories and singing. These are all things that he is able to do thanks to the Ketogenic Diet. Max had his first seizure at the age of two and a half. He was put on medication two weeks later when he started having multiple seizure types that were uncontrollable. In the first three-months three medications were attempted for treatment, but they were not controlling all of Max's seizures. This is when our world…
Monday, 07 February 2011 10:19
Tim's Story - "First Do No Harm"
In April, 1971 my three year old son had a grand mal seizure. In the next four months we took him to six hospitals, 21 doctors, and he had 38 drug combinations. He was having between 150 and 200 seizures a day. He spent the last two and a half months at Pres-St. Lukes in Chicago in intensive care. I was almost praying Tim would die instead of living his life as a grossly impaired person with this problem. I went to the University of Illinois library and read for weeks. I got a copy of Johns Hopkins book about the ketogenic diet. I called Baltimore and they told me…
Monday, 07 February 2011 10:19
Matthew's Story
When Matthew was 9 months old, he was having a bath when his first seizure occurred. I had never seen anything so frightening, and it was happening to my son. The first one lasted for over 15 minutes. That was Spring, 1995. By the time he was 15 months old he was having seizures daily, tonic clonics, complex partials, absences and myclonic jerks. He had been formally diagnosed with uncontrolled complex epilepsy, only they couldn’t tell me what had caused it – it was just ‘one of those things’. I was continually reading everything I could get my hands on regarding epilepsy, contacting every organization I could find, talking to…
Monday, 07 February 2011 10:19
Sidney's Story
Our five year old daughter Sidney started having countless head drop seizures every day, when she was almost two years old. After two years of numerous trips to the doctor, trying ten different medications and surgery, the seizures continued. She had to wear a helmet, she was in a wheelchair, she could barely take two steps at the most. We desperately kept on trying to find some way to help her. We prayed and prayed. One day I felt the urge to watch this movie called First do no harm, after watching that movie I couldn't believe how our lives were so much like theirs, I felt like we were…
Monday, 07 February 2011 10:19
Chet's Story
In 1945, at age four, I was put on the ketogenic diet for absence epilepsy by Dr. Samuel Livingston at Johns Hopkins Hospital. I remember the office on St. Paul Street and the EEG inside of a cage like room and copper wires glued all over my head. I think I fasted for about a week and was given liver and spinach for my first meal. I remember taking cardboard containers of mayonnaise to school for my lunch and my mom weighing everything on a scale. My favorite meal was a hot dog on a string in a Thermos bottle of tomato soup. After a couple of years the diet…
Monday, 07 February 2011 10:19
Cady's Story
Cadence (Cady) Noelle Rohrbaugh was born healthy on November 26, 2004. Her biological mother, a 22-year old college senior, chose us to provide Cady with the kind of love, stability, and life experience she could not. We brought our daughter home on Christmas Eve the same year. Cady charmed everyone with her bright eyes and sunny disposition. Developmentally on-track in every way, she loved to sing and had a talent for working difficult puzzles. Years earlier, we’d returned to our hometown of Rochester, MN—home of the Mayo Clinic—to be close to family and the best healthcare around. Laura had epilepsy, and had struggled to find good neurology resources elsewhere. Though…
Monday, 07 February 2011 10:19
Angelina's Story
This is our "Angel" Angelina Schmitt. Angelina was diagnosted with infantile spasms at 4 months old. We first used ACTH and lived with the unbearable side effects of this drug. We tried every seizure medicine including medicines from outside of the USA and a partial corpus callosum brain surgery. With the help of Dr. Harry Chugani and our dietitian Ms. Rebecca Sparks of Children's Hospital of Michigan Angelina has been seizure free for over 2 years with the Ketogenic Diet. Currently she is receiving therapies in her new school and her twin sister Alexandra and all of her family are all very proud of her and her progress she makes…
Monday, 07 February 2011 10:19
Serena
Our story began on September 18 2008. My daughter was 5 years old, in kindergarten and a bright and healthy kid. That all changed when she had her first tonic clonic seizure on September 19, 2008. It was the first day of my new life. It all just went from bad to worse; she missed over 40 days of school and even when she was there, she wasn’t there. She had to be admitted into the hospital every month for almost a year for status epilepticus. In February she was in subclinical status. It was like my child was gone she had no emotion in her eyes and she had…
Monday, 07 February 2011 10:19
Noah
Noah had his first seizure ever, a grand mal, in May 2009, just 2 weeks after his 4th birthday. Prior to this, his development had been completely normal. He went on to have 3 more seizures in the next 3 days, with normal results on LP, CT, MRI and EEG. He was put on Trileptal and sent home, seizure-free. Two weeks later, we noticed that he would have periods of “space outs”, occurring maybe one or two times a day. At our followup neurology appointment, he “spaced out” right in front of the neurologist, confirming what we all thought -- these “space outs” were absence seizures and we were dealing…
Monday, 07 February 2011 10:20
Keaton's Story
Our 4 year old son Keaton has had epilepsy since he was born. He had a very traumatic birth, which also resulted in his Cerebral Palsy. Keaton tried countless medications, none of which adequately controlled his seizures. He always had Grand Mal seizures that would progress to Status Epilepticus every time. Keaton was constantly wiped out from the seizures or the emergency diastat we had to give him to stop them. After several years of trying different combinations of drugs without success, we found a new pediatric neurologist. Dr. Saleem Malik at Cook Children's Center suggested we try Keaton on the diet. Keaton has been on the diet for 3…
Monday, 07 February 2011 10:20
Carson's Story
Our journey with epilepsy started in January 2009. Carson was 22 month olds when we started noticing him getting really quiet and having staring spells. While staring, he would get this little grin on this face, a grin unlike his normal smile. We took him to the pediatrician and were told to keep an eye on this behavior, but that it most likely wasn't anything to worry about. How I wish the latter part of that sentence was true. A few weeks later, I noticed Carson's hands trembling and knew something was wrong. The pediatrician referred us to a neurologist. The neurologist ordered an EEG and confirmed seizure activity. We…
Monday, 07 February 2011 10:20
Macie's Story
Meet our Keto Kid - Macie. In her family’s eyes, she is a hero by any measure. She has a rare metabolic condition called GLUT1 Transporter Deficiency Syndrome. In GLUT1 ds patients, there is a problem with the way glucose reaches the brain and it is left starving for the energy it needs to grow, develop, and function properly. Ketones give the brain an alternate fuel source, and although the ketogenic diet doesn’t completely resolve the issues and symptoms associated with GLUT1 ds (seizures, movement disorders, speech/language and developmental delays), it can give a great deal of relief and improvement. Even though she is not seizure free, Macie is doing…
Monday, 07 February 2011 10:20
Noah's Story
Noah is a happy loving 6 1/2 yr old boy. He has a genetic form of epilepsy known as GEFS+ (Generalized Epilepsy Febrile Seizures Plus). His first seizure occured at 6 months. Two weeks later another seizure. He suffered weekly tonic clonic seizures on average and more often when ill. We guestimate he has survived around 300 seizures. He failed 4 anti-epileptic drugs and suffered through many serious side effects during those drug times. Noah's longest seizure lasted 3 hours. He has been hospitalized too many times to count, placed in the ICU many many times and often suffocates on his saliva during seizures. We have come extremely close to…
Monday, 07 February 2011 10:20
Cameron's Story
Cameron started the keto diet at the age of 8. We were out of options with medications,of which he was on 3 at once, he had the VNS implant and still having upwards of 60 seizures per day. Cameron was sleeping most of the school day either from all the medications or post seizure coma. We met with the Keto dietition, Carrie Loughran, and she counseled us saying if we could just give her 60 days to try out this new lifestyle she felt confidant she could help make a difference in Cameron's seizures. We were worried about the extra work involved with the diet but we knew we had…
Monday, 07 February 2011 10:20
Christina's Story
It was as stormy morning in late June 1997 when Christina was born, seemingly healthy. At seven months old, immunizations were given and 48 hours later she was hospitalized with seizures eight to ten seconds apart. Like countless other families struggling with seizures, we were in and out of the hospital, and spent days with little sleep due to seizures that came throughout the night. After trying every anti-seizure drug, we heard about a special diet called ketogenic; not, however, from the neurologist in charge of her care, but from a sister who had seen “First Do No Harm”. Christina’s neurologist told us that infants could not go on this…
Monday, 07 February 2011 10:20
Megan's Story
November 26, 1988, Thanksgiving Day Megan Hardgrave and her parents boarded an airplane bound for more than 2000 miles away from home –Texas to Baltimore, Maryland. When Megan was 10 years old, she made a tough commitment of 2 years to a medical diet—the Ketogenic Diet. She had her first seizure as a toddler at age 2 ½ years according to her mother, Kay. She continued to have them for 8 more years. Megan’s parents, Kay and David, after doing lots of research and with prayful consideration, wrote a heartfelt letter about Megan to Dr. John Freeman at Johns Hopkins. Upon thinking that they were facing hemispherectomy surgery as a…
Monday, 07 February 2011 10:20
Aaron's Story
Our son Aaron had his first seizure when he was 4 years old, April 2008. His diagnosis was Doose Syndrome. Over the course of 8 months he was put on several different meds or med combinations and his verbal abilities were going. He was also having behavior problems. By Christmas 2008 he was on 3 meds and having multiple seizures a day, needing his rescue med daily. Our neurologist said our only hope was the Ketogenic diet. We spent 5 days in the hospital adjusting to the diet and within 7 days he was seizure free and down to one med. He has been seizure free for one year, 3…
Monday, 07 February 2011 10:20
Karolina's Story
Moja córka karolina w wieku 3,5 roku dostała pierwszego ataku toniczno-klonicznego,dany jeden lek ,napady nie ustępowały dodany drugi lek, sytuacja nadal nie wesoła dodany trzeci lek,większe skutki uboczne niż działanie odstawianie,dodany następny lekka poprawa na krótki okres i apiać nawrót ataków.Dopiero z czasem znalazłam w internecie o dr.Bachańskim z Polskiego Centrum zdrowia dziecka w Warszawie, zastosowanie diety.Jesteśmy na niej od kilku miesięcy ale niema żadnych ataków tak jakby choroba dosłownie,,uciekła,,naprawde warto zastosować dietę ketogeniczną! Translation My daughter Karolina experienced her first seizure at 3-1/2 years. It was a tonic-clonic (convulsive) seizure. She was given a seizure medication but it did nothing, then a second drug was added but this did…
Monday, 07 February 2011 10:20
Aurora's Story
My daughter Aurora had her first seizure 11 hours after her 2 month vaccines. She continued to seize for 3 weeks until she had an intercranial bleed. This bleed left a scar in my daughters brain (in her basal ganglia). Because of this scar, my daughter developed intractable Epilepsy. She had tried Phenobarbital, Tegretol, Keppra, Topomax, Depakote, and was being admitted to the hospital every other day for Status and Cluster seizures. She was having up to 40 visible seizures a day, and hundreds of Aura's. We watched her life fade away in front of our eyes! It wasnt a hard decision, as I sat in the ER with Aurora…
Monday, 07 February 2011 10:20
Jacob's Story
My sweet Jacob was born in March of 2006. His biological mother was addicted to drugs, so Jacob spent his first 9 days in CPS foster care. His paternal grandparents (in their early 70's)found him and took him in. Soon after it was apparent that his head, forehead especially, was getting larger every day. At 3 months of age he had surgery for VP shunt placement to resolve the increasing hydrocephalus. Jacob has always been an extremely happy little boy. He absolutely loves music. Anything we need,(meds, shots, bp, bath, meal, etc.) we can get with music. Any kind is good but children singing is his favorite. Jacob developed a…
Monday, 07 February 2011 10:20
Eliana's Story
Eliana started college not too long ago. After being diagnosed with infantile spasms as a baby,we NEVER thought she'd be able to attend college. At six months Eliana had still not rolled over or used her hands. She continued to cry and scream and make the odd movements. Denial was over. Something was wrong. We could no longer say "She'll roll over tomorrow. Give her time." The morning of her appointment with her pediatrician Eliana was sitting in her baby seat and she had a series of the movements in a row. Her eyes rolled back in her head and she let out a shriek. This was the worst I…
Monday, 07 February 2011 10:20
Chases
It was September 27th, 2008 when my husband was on his way with all of the boys to an event at school. He went to get Chase (age 3) out of the car and found him postictal. I remember hearing my husband say on the phone "Chase is all whacked out, I'm coming home." I thought, "Geez, what'd he do now?" (He's quite the character). My husband explained the symptoms and we quickly rushed him to the ER. We were told it was probably a one time occurrence, and there was nothing found so we were sent home...and he was just fine. Within 24 hours, Chase had another episode that…
Monday, 07 February 2011 10:20
Elmas's Story
Turkish kızım elmas 8 aylıkken gözlerde dengesizlik ve dalmalarla baslayan nöbetler basladı.15 aylıkken yürümeye baslayınca denge kaybı,yorulma,halsizlik,dıkkatkaybı ve gözlerde haraketlılık olmaya basladı.mıyoklenıkastetık epılepsı tanısı kondu ve lumınatten.depakın,rıvotrıl,convulex,lamıctal,trıleptal,kortızon,kepra,sıbelyum gıbı epıleptık ılaclar aldı.hic bırının faydasını görmedık.25\05\2009da bos sıvısından glukoz transport defektı tanısı kondu ve ketojenık dıyet tek tedavısı dendı ve basladık.bıraz faydasını gördük ama gec teshıs ve convulex adlı ılac hastalıgımızı tetıklemış!dyet ıcın ketocaal adlı mama almamız gerekıyor ama maalesef getırtemıyoruz.cünkü hastalıgı kımse bılmıyor.dr.lara ben anlatmaya calısıyoru bıldıgım kadar.DİKKAT>BU HASTALAR YEŞİL CAY,CİKOLATA,COLA,KAHVE,ÖMÜR BOYU UZAK DURUN.cümkü hastalıgı tetikliyormuş.kızım 15 yasında ama sözel zeka yası 10,el becerı yası 5 yas cıvarında.lütfen bırbırımızı bılgılendırelım cünkü dr.lar bıze dogru bılgı vermedıler,bır bıgıde alamıyorum.herkese allah yardım etsın…
Monday, 07 February 2011 10:20
John's Story
John’s arrival was the happy culmination a challenging pregnancy, labor, and delivery. On his second day of life, I asked the pediatrician about some strange jerking I had seen him make with his right arm. He assured me it was nothing. However, after we took John home, he continued to have episodes, about 30 seconds long, where his eyes would deviate to the right and the right side of his body would jerk. When he was eight days old, we took him to the emergency room, where he was admitted to the NICU for the following two weeks. There our suspicions were confirmed: he was having seizures. I don’t like…
Monday, 07 February 2011 10:20
Caden's Story
Our son Caden had his first Grand Mal seizure at 2-months-old. We discovered he has a sodium channel mutation and within a few months he had multiple types of seizures. He had myoclonic, partial, focal, absent, drop, and generalized seizures. His Grand Mal and partial seizures didn't stop on their own and sometimes lasted more than an hour long even with multiple doses of diastat. Combined he has 30-150 myoclonic, focal, absent, and drop seizures each day. Caden was also diagnosed intractable, meaning medication doesn't control his seizures. Caden was developing normally despite the multitude of seizures but we knew that it was only a matter of time before we…
Monday, 07 February 2011 10:20
Sam
Sam’s story is almost exactly the same as any other child with Glut1 Deficiency Syndrome. The pregnancy was normal, and Sam was induced and delivered normal at 41 weeks. His first 6 months were uneventful, although I noted he developed more slowly than his brother (2 years older). Sam began Physical Therapy with First Steps at 9 months. OT and Speech were added over the next few months and have continued to this day. At about 9 months Sam had his first observed eye-dancing episode, although looking back, there may have been other episodes so fleeting that I just didn’t notice. A few months later he had a drop seizure…
Monday, 07 February 2011 10:21
Abby's Story
When I first spoke with you I was searching for information on the ketogenic diet. My daughter was suffering from infantile spasms and it was taking away everything she had worked so hard for. Abby was born with complex chromosome abnormalities that were undocumented world wide. The doctors said she would probably develop seizures. The first seizure was exactly one year ago today, December 15th. We spent a few days at our local hospital before we were rushed to Denver Childrens Hospital. Abby was diagnosed with "floppy airways" so during a seizure she would turn blue and would go without oxygen for 2-3 minutes at a time. It was really…
Monday, 07 February 2011 10:21
Rian
I was 9 years old when my mother started noticing my epileptic episodes. In the middle of conversations I would abruptly stop speaking as if somebody pushed pause on the DVD player. Ten seconds later my seizure would be over. The metaphorical resume button was pushed. That would bring me out of my daze as I tried to regain my thought to no avail. I was blessed with a mother that was a Registered Dietitian and firm believer in importance of diet and alternative medicine. In 1995, I remember her saying she found research about a diet that had been known to reduce seizures in children. Since my seizures were…
Monday, 07 February 2011 10:17
Nevin's Story
I truly believe The Ketogenic Diet not only saved my daughter's cognitive abilities, but also saved her life. Nevin's first seizure was at 10 months of age. She was well-controlled on one medication until her seizure pattern changed at the age of four. She was having 500 or more seizures per day, most of them sub clinical and very unobvious. After failing a total five drugs...
Tuesday, 31 January 2012 14:52
Jonathan's Story
Today we're celebrating a little over 10 months of being seizure free, and 2 weeks of being completely med-free! This is our story. Jonathan started on the classic 4:1 ratio in early February 2011. Prior to that he'd been having 3 to 6 tonic and tonic/clonic (grand mal) seizures per week. He'd gone through about 5 different meds, all of which failed to bring his seizures under control (Topomax did control his seizures for about 3 years, but then failed). At the time Jon initiated the diet, he was on Depakene (Valproic Acid) 750 mg a day. The initial 10 days on the diet looked good -- no seizures.…
Saturday, 17 March 2012 11:37
Geoffrey's Story
On April 9, 2011, our world changed forever. Our son Geoffrey was 16 months old. On the previous day, my mom had called me at school and said that Geoffrey had fallen and hit his head 2 different times and she didn't know why. We thought maybe he just slipped...but he continued to fall mysteriously, and then as I watched him feed himself, I saw him drop his spoon as his hand went limp and his body fell forward. We took him to the. He had CT scans and EEGs, gets blood work done, and sat around forever wondering what could possibly be wrong with your perfect child. When we…
Sunday, 03 June 2012 22:09
Luke's Story
My name is Dawn Iversen and I have a child with Myoclonic Astatic Epilepsy aka: Doose. Our nightmare began on April 19, 2009 when our little guy, Luke was just 2 years old, almost 3 in July. Luke started with one Tonic Clonic, aka: a Grand Maul, that lasted about 4 minutes, ambulance took him to our local hospital, Centegra in Woodstock. 3 days later, Luke slipped into an almost continual seizure and he was admitted to Lutheran General Hospital in Park Ridge. After a long 7 day stay and 2 medication failures, doctors finally found a third drug that worked for Luke and sent us home. After only a…
Wednesday, 04 July 2012 12:26
Brandon’s Story
Brandon was a healthy, normal 3 year old boy when our lives were changed forever. Brandon had previously had 3 febrile seizures due to high temperatures so when he fell over having a seizure on August 29, 2009, I wasn’t all that worried. Unfortunately, Brandon did not have a fever. One seizure turned into two and then three and then non-convulsive status. We spent most of September 2009, in and out of 3 different hospitals. The hospital did every possible test that we could think of, including an MRI, spinal tap, blood tests and Video EEG. Brandon was put on Phenobarbital, trileptal, depakote, keppra and zonegran to try to find…
