Bradford Bosley

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 something that would control the seizures. Not only were the seizures not controlled, but he started having other types of seizures, including myoclonics, atonics, drops and absence seizures. After a tentative diagnosis of Doose Syndrome, we were sent home on depakote, keppra and zonegran.

The tonic/clonic seizures appeared to be controlled but Brandon was still having 20+ drops and myoclonics a day. I had to pull him out of school and out of all of his other activities. Everything in our lives changed. I was afraid to be alone with Brandon. My husband started working at home and my daughter, who was just starting first grade at the time, didn’t want to leave my side. She never knew who would care for her when she arrived home from school. She didn’t want to go to gymnastics or dance class anymore. We put carpeting and foam letters all over our floors so Brandon wouldn’t crack his skull when he fell.

Our previously happy, sweet little boy was now a droopy, angry, jittery mess. We resisted our neurologist’s recommendations to increase the meds and instead opted to try the Modified Atkins Diet (MAD). On November 16^th, 2009, the day after Brandon’s 4^th birthday - when he fell face forward into his piece of birthday cake - we started him on the Modified Atkins Diet. Our neurologist at the time encouraged us to try MAD first rather than go directly to the more strict Ketogenic Diet.

We fumbled through the first few weeks of MAD with no guidance and no real idea of what we were doing. We continued to spend our nights researching cures and treatments for epilepsy and I joined the yahoo support group for Doose Syndrome. Through that group I “met” a woman who urged me to see Dr. Bergqvist at the Children’s Hospital of Philadelphia and to consider trying the ketogenic diet. I really, really, really didn’t want to do keto. I liked the relative flexibility of MAD as opposed to the extreme strictness of keto. I was determined that MAD could be Brandon’s cure!

By February 2010, 5.5 months after the seizures started, we had secured an appointment at the illustrious Cleveland Clinic with Dr. Ingrid Tuxhorn, a neurologist who had studied in Germany under Dr. Hermann Doose. The best part about our trip to the Cleveland Clinic was meeting 3 other families who all had small children also suffering from Doose Syndrome. We left the Cleveland Clinic with instructions to increase Depakote and to switch to the full 4:1 ketogenic diet. We also left with a beautiful printout of Brandon’s eeg which actually had a NORMAL background with NO slowing! Despite still having 15-20 myoclonic, absence and drop seizures per day, the Modified Atkins Diet had normalized the background of Brandon’s eeg, which previously was only at 3-4 Hz background!!

With the support of the yahoo support group for Doose Syndrome, we embarked on the ketogenic Diet in April 15^th, 2010 at the classic 4:1 ratio. We are one of the very, very lucky ones. FOUR days later the drops, myoclonics and absence seizures VANISHED, like MAGIC! About 30 days later, on May 20^t,h, Brandon did have 2 tonic/clonic seizures but those were due to a high fever and an ear infection. Eleven days following the ear infection Brandon had 4 tonic/clonic seizures, most likely due to excess Powerade 0, (I didn’t realize the importance of following the strict rules of Keto – I never made that mistake again!) and that was it! We haven’t seen any seizures since June 1, 2010.

Brandon finished weaning his meds on March 13, 2011, and he is now a happy, sweet, kind little boy again! We continue on the Ketogenic Diet and are now into our 17^th month and it is part of our life. Brandon’s ratio is now at a bit more manageable 3.25:1 and we are looking forward to dropping even further in the coming months. The Ketogenic Diet has become my passion. Not only has it apparently saved Brandon’s life, but it has saved our family. My daughter is happy and now eagerly participates in after-school activities. My husband is allowed to leave the house again because I am not afraid to be alone with Brandon.

Most importantly, Brandon accepts his diet and it is part of his life. He can ride a bike, go swimming, play with his friends, and go to school like other 5 year old children. He is finishing pre-k now and will be attending general education kindergarten in September. Thanks to the Ketogenic Diet, Brandon has been able to catch up on all that he missed while his brain was attacked by seizures. He has gained back all of his academic losses and is exactly where he needs to be.

If you are new to the shocking diagnosis of Doose Syndrome and are just reading this at the beginning of your journey, please consider trying diet therapy as soon as possible!! There are studies ongoing which seem to show a much more favorable outcome for the child, both seizure-wise and cognitively, the earlier the seizures are controlled.

JULY 1, 2012

UPDATE: Brandon is now weaning off the diet. He is currently at 1.5:1 ratio and enjoying more foods. We had a totally normal 24 EEG in December, 2011. We are hopeful that Brandon can be totally off the Ketogenic diet in September or October and eating foods like the other first graders.

Once he is off the diet, refined sugars will still need to be limited. We won’t have to weigh food anymore and Brandon will be allowed to eat fruit and bread and pasta and a complete bowl of cereal! I don’t think restricting refined sugars is at all a hardship. It is a healthy way of eating.

Published in Our Keto Kids

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 week at home and Luke in a “zombie-like-state”, the meds stopped working yet again. Helpless and hopeless, with seizures happening at the amount of 50 to 100 a day, our long epilepsy journey, with these terrible, terrible demon’s that were taking over my baby was just about to get worse.

So, we find a new hospital, RUSH Medical Center in Chicago and add more and different meds, a biopsy, a spinal tap and a boatload of blood draws, more MRI’s, more EEG’s and now a son who no longer is the boy from a month ago, Luke continues having upwards of 500 to 700 seizures daily, nothing is helping.

It was August when we packed up our truck and the entire family (including the mother in law) and headed to Cleveland, The Cleveland Clinic. It was an amazing place, really a city within a city and we were excited this was going to work for Luke. We wanted brain surgery…..NOTHING less!!! (…..brain surgery??..what was I thinking!!!) We met with our team of Neurologists and Epileptologists and pleaded for brain surgery and Luke to come home, out of this drug induced state that the meds were causing. After MORE tests, bloods draws, EEG’s and numerous days in the hospital, we finally get the answer we did NOT want to hear: “We are sorry to inform you, Luke is NOT a candidate for brain surgery.”

DEFEATED. EMPTY. LOST.

We ask “What now?” This is no life for our boy…any boy. Doctors said that they had one last resort and it was a diet, known as the Ketogenic Diet that could possibly help with no guarantees. I had remembered a woman from an Epilepsy Support Group Meeting in Crystal Lake mentioning something about her daughter on this same diet and that they achieved “seizure-freedom” in a few short months. While in the hospital, I researched this diet and found the Charlie Foundation and I am proud to say, “I currently am a mother of a Keto Kid!!”

We started the diet at Cleveland Clinic on August 31, 2009, when just days before Luke was recorded having just under 1,000 seizures in a day to approximately 30 seizures on the first full day of keto. Two days later, we were transported by ambulance back to our home hospital, RUSH in Chicago and remained there for an additional 10 days. Luke has been seizure-free since December 19, 2009, is currently on the Ketogenic Diet with our current hospital Children’s Memorial in Chicago and Luke has been weaned off all anti-convulsant medications since October, 2010.

MY SON LUKE IS BACK, WHAT A MIRACLE!!

Published in Our Keto Kids

Tuesday, 01 May 2012 19:36

The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet

The Keto Cookbook: Innovative Delicious Meals for Staying on the Ketogenic Diet. Written by Dawn Marie Martenz and Laura Cramp. Published by Demos, 2011. http://www.barnesandnoble.com/w/keto-cookbook-dawn-marie-martenz/1101003033?ean=9781936303236

Published in Books

Tuesday, 01 May 2012 19:34

Honest Medicine

Honest Medicine Written by Juia Schopick. Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases. Published by Innovative Health Publishing, 2010.

Published in Books

Tuesday, 01 May 2012 10:58

USA Today reports a ‘miracle’ diet to treat children with epilepsy– 1/1999

Recognizing a 'miracle' The high-fat ketogenic diet can ease seizures in epileptic children

USA Today; Arlington; Jan 12, 1999; Kathleen Fackelmann;

Abstract:

In desperation, they turned to the ketogenic diet, a controversial regimen that involves feeding children huge amounts of fat. The diet is thought to help some children by inducing a seizure-calming condition called ketosis. Ketosis occurs when the body is forced to burn fat instead of sugar.

Within 72 hours of starting the diet, Charlie (Abrahams) was seizure-free. "We felt as though we had had a miracle," recalls Abrahams, who in 1994 started the Charlie Foundation to Cure Pediatric Epilepsy.

While Abrahams' other films such as Airplane! gave fans a laugh a minute, First Do No Harm fueled a grass-roots effort for more research on the diet, says John Freeman, the neurologist at the Johns Hopkins Medical Institutions in Baltimore who treated Charlie.

Full Text:

You know you've produced a hit TV movie or series when it develops its own spin-off -- another show that sustains the impact of its original.

For writer/director Jim Abrahams, the most significant spin-off from his 1997 TV movie, First Do No Harm, had nothing to do with entertainment but a lot to do with the health of his epileptic son and thousands more like him.
The movie, starring Meryl Streep, captured a Chicago family's struggle to conquer the seizures racking their son's body.

Abrahams was uniquely qualified to write and direct the movie. He and his wife, Nancy, would never forget their own fight to help son Charlie when standard epileptic drugs and even brain surgery could not halt the brainstorms that seized his small body.

In desperation, they turned to the ketogenic diet, a controversial regimen that involves feeding children huge amounts of fat. The diet is thought to help some children by inducing a seizure-calming condition called ketosis. Ketosis occurs when the body is forced to burn fat instead of sugar.

The diet can be risky. But it can represent the only hope for children who don't respond to standard treatment.
Within 72 hours of starting the diet, Charlie was seizure-free. "We felt as though we had had a miracle," recalls Abrahams, who in 1994 started the Charlie Foundation to Cure Pediatric Epilepsy.

While Abrahams' other films such as Airplane! gave fans a laugh a minute, First Do No Harm fueled a grass-roots effort for more research on the diet, says John Freeman, the neurologist at the Johns Hopkins Medical Institutions in Baltimore who treated Charlie.

That groundswell is paying off. In December, Freeman and colleagues published the largest, most definitive study to date of the ketogenic diet.

The findings, reported in Pediatrics, confirm research that suggested the diet does control seizures in some children. Two additional new studies highlight a naturally produced substance that may underlie the diet's success.
Neurologists, who even a few years ago had viewed the diet with extreme skepticism, are now acknowledging its value. "There's recognition now," says Harvard neurologist Steven Schachter. "This form of therapy does have a role to play" in treating some cases of pediatric epilepsy, he says.

About 350,000 children and teen-agers suffer from epilepsy, a disorder with a variety of causes that leads to a disturbance in the brain's electrical activity. Doctors can harness seizures 80% of the time with drugs. But for the others, drugs simply don't work.

Doctors said Charlie's seizures would ultimately damage his brain, leading to mental retardation. "You feel your child has been given a fate worse than death," Jim Abrahams says. That frustration led the Abrahamses on a search that brought them to Freeman, who used the diet to treat a handful of children each year.

Because no rigorous scientific study of the ketogenic diet had been done, most neurologists discounted it as unproved and potentially unsafe. Indeed, the Abrahamses had taken Charlie to top pediatric neurologists in the USA. Not one mentioned it as an option.
The new research has given the ketogenic diet the credibility it had long been lacking. In the Pediatrics study, Freeman and his colleagues examined 150 children ages 1 to 16 who continued to have seizures despite treatment with at least two anticonvulsant drugs.

Doctors first hospitalized the children for five days, then gradually weaned them off their usual diet and put them on the ketogenic diet.

Kids on the regimen eat a high-fat, low-protein, low-carbohydrate diet.

Meals typically include small amounts of fish, meat, poultry, fruits and vegetables and lots of added fat, usually in the form of butter, oil or heavy cream.

The diet provides a whopping 90% of total calories from fat, says Jane McGrogan, a nutritionist at the Hopkins program. The average American diet gets between 30% and 40% of its calories from fat.

Kids love the cream but generally don't like the limits on sugar and carbohydrates. They must avoid pastries, sugary soda pop, potato chips and pretzels, McGrogan says.

Ten-year-old Timothy Finnigan of Satsuma, Ala., says the diet can be tough to follow. "It's hard when you look at what everyone else is eating," says the fifth-grader, who brings his lunch to school.

The diet also puts demands on parents, who must weigh foods and keep strict tabs on calories. Most parents find they must prepare meals without the help of processed foods, which can contain hidden carbohydrates, McGrogan says.

Still, the Hopkins team found that most parents and their children successfully followed the diet. The researchers found that 55% of children who started the diet stayed on it for a year. Nearly all of those children had fewer seizures on the diet, with 27% getting almost complete relief.

"These are the most desperate cases," Freeman says. "Even in those we get a spectacular success rate."
Children who stopped the diet usually did so because it wasn't working, Freeman says.

Freeman thinks the diet shouldn't just be a last resort but ought to be considered earlier. That may happen as doctors learn of a new study by Charles Niesen of the University of Southern California in Los Angeles. His findings show that a naturally produced substance called beta-hydroxybutyrate (BHB) may explain how the ketogenic diet works.
Niesen and researcher Sara Lustig designed a rat study to test BHB, one of a group of substances called ketones manufactured by the liver during the ketogenic diet. The diet forces the body to burn fat instead of sugar, producing BHB and other ketones during that process.

The researchers found BHB could block seizures in the rats. "We actually prevented seizures in 50% of the animals," Niesen says. The team presented results in December at the American Epilepsy Society's annual meeting in San Diego.
Niesen's research suggests that BHB calms the brain's electrical disturbance by activating certain protein receptors on brain cells. That raises hope that BHB in drug form will stop such brainstorms.

If Niesen gets Food and Drug Administration approval, he could launch a study of BHB in children as early as this spring. "I'm eager to get the kids started," he says.

Meanwhile, another study presented at the December meeting indicates that doctors can fine-tune the ketogenic diet to produce the most beneficial levels of BHB in the blood.

Lawrence Brown, Claire Chee and their colleagues at the Children's Hospital in Philadelphia developed a device to keep track of BHB in the blood of 12 epileptic children who were on the ketogenic diet. When eight of the 12 suddenly started having more seizures, the team found the level of BHB in the blood had dropped. The researchers adjusted each child's diet to boost BHB, bringing seizures under control within 12 hours, Brown says.

Just as a diabetic keeps track of insulin, children with epilepsy one day may be able to check their BHB levels at home to make sure the diet is working properly, Brown says.

Although parents might be tempted to view the diet as a natural approach to the treatment of epilepsy, researchers warn that the diet is harsh.

"You're using the diet as a drug," says Philip Sheridan, an epilepsy expert at the National Institutes of Health in Bethesda, Md. Parents who want to consider the ketogenic diet should carefully weigh the risks, he says.

According to Sheridan, those include kidney stones, immune system abnormalities, low blood sugar and clogged arteries. Sheridan worries that the high-fat diet may set the stage for a heart attack later in life.

Many children can be weaned off the ketogenic diet within a few years, Freeman says. Some go off the diet and remain seizure-free, he says.

Yet some children, like Charlie Abrahams, must stay on the diet or the seizures return. No one really knows the effects of maintaining a child on such a diet for years or even decades, Sheridan says.

He worries that such children may be vulnerable to growth retardation. Freeman, Sheridan and other experts advise parents to go on the diet only with the appropriate medical and nutritional help. Parents who have tried this diet on their own have had tragic results, Freeman says; several children have died as a result of an unsupervised ketogenic diets. The risks of an unsupervised diet include malnutrition, vitamin deficiencies and chemical imbalances.

At Johns Hopkins, the staff monitors children closely to make sure they're well-nourished and growing properly.
For Charlie, and many children like him, the future appears considerably brighter today than it did five years ago. In 1993, the Hopkins program was one of only a few that parents could turn to for the ketogenic diet. Now, many major medical centers offer it.

And research on the diet has exploded. The 1993 Epilepsy Society's meeting had no papers on the ketogenic diet, Freeman says. This year, 23 researchers presented findings.

The new era "provides hope for my family and lots of other families," Abrahams says.

Published in Resources

Tuesday, 01 May 2012 10:44

People Magazine - "Recipe for hope" – 1994

The disease, says Abrahams, was causing the “slow disintegration of Charlie (in ’92)

“You have to go with hope, “says Abrahams (at home in Santa Monica with Charlie).

Babies, Nancy Abrahams well knows, are inexplicable creatures, one minute engaging you in a round of peek-a-boo, the next minute lost in some deep trance. So when her son Charlie went limp in her arms a few days before his first birthday in March 1993, Nancy, 39, didn’t think much of it. Moments later, after all, he was back playing hide-and-seek amidst the pillows on her bed. “I didn’t even mention it to my husband,” she says.
Days later, it was her husband, 50-year-old producer-director Jim Abrahams—co- creator of the Airplane!, Naked Gun and Hot Shots! movies—who noted a disturbing bit of behavior. He had been playing with Charlie in the backyard of the family’s million-dollar Spanish-style home in Santa Monica when suddenly the boy’s arms jerked up oddly in the air. Jim went to find Nancy.

“Have you ever seen him do this thing with his arms?” he asked her.

Nancy’s throat tightened. She had not—but this, combined with the limp spell, did not seem like normal kid stuff. The Abrahamses immediately took Charlie to a local pediatrician, Dr. William Gurfield. After witnessing a brief seizure in his office, Gurfield sent the Abrahamses to a pediatric neurologist, who conducted various tests and delivered the devastating news: Charlie had Lennox-Gastaut syndrome, a severe form of epilepsy, which, if unchecked, would cause mental retardation. Worse it was soon surmised, Charlie was part of the 15 percent of the nation’s 375,000 children with epilepsy who do not respond to drugs. Months later, after $100,000 worth of tests, drugs, and surgery, Jim and Nancy still had found nothing to stop the convulsions—lasting from a few seconds to 45 minutes—that gripped their child up to 100 times a day.

“I remember thinking it was clear that none of us would ever smile again,” says Jim, recalling his son’s almost constant state of seizure. “We actually believed our child had been given a fate worse than death.”
Stooping today to pick up his little boy, who has been seizure-free for 17 months, Jim lets out a sigh of relief. He was wrong—as were all the doctors who believed that drugs, if anything, could help Charlie. “I was raised to believe doctors are healers and that the answers to an illness come in prescriptions,” says Abrahams. “And that just isn’t true.”

After trying nearly all modern medicine had to offer, Jim and Nancy ultimately found an unorthodox—and low-tech—answer: a high-fat, no-sugar diet. But their path to that remedy tested them severely.
The failure of Charlie’s anticonvulsant drugs was one of the family’s lows. At one point, Charlie’s tiny body (he weighed 21 pounds at the time) was absorbing four drugs at once—and was still racked by seizures. “We would just hold him and wait for something to happen,” says Nancy. “It was a vicious cycle of sleepless nights, drugs and worry.”

The couple became virtual recluses. Jim stopped working to help his wife at home. “We were lucky,” he says. “We didn’t have to worry about finances.” For months they did little more than take their older children, Joseph, 10, and Jamie, 9, to school and shuttle Charlie to one of the eight doctors they consulted at various times. They tried to give Charlie as normal—or at least as safe—a life as possible. “We padded a room so he wouldn’t hurt himself when he would try to walk,” says Nancy. “We even put a helmet on his head.”

“The ketogenic diet got lost,” says Dr. John M. Freeman (at the Johns Hopkins Outpatient Center in Baltimore, with dietitian Millicent Kelly and a child with epilepsy), “because modern technology believes the next drug will work.”

In the late fall, Charlie’s primary physician, Dr. Donald Shields, head of pediatric neurology at the UCLA Medical Center, found two cysts in Charlie’s brain. Though he could find no direct connection to the seizures, Shields wanted to remove them just in case they were the cause. But the delicate 2 _ - hour operation proved fruitless. Shields told the Abrahamses that after months of exploring medical and surgical remedies, he saw no ready cure for Charlie. Desperate, the Abrahamses brought a faith healer into their home. “He prayed some sort of gibberish over Charlie, and we just cried, “says Jim. Then they took Charlie to a herbalist in Texas, who recommended exorcising modern technology. “He told us to unplug our microwave,” says Nancy.

Finally, Jim took the matter into his own hands, doing research in the UCLA Medical Center library. There, reading a 1990 book called Seizures and Epilepsy in Childhood: A Guide for Parents, co-authored by Dr. John M. Freeman, he discovered the ketogenic diet. A folk remedy for epilepsy first given serious medical consideration at the Mayo Clinic in Rochester, Minn., in the 1920s, the diet is based on ketosis, a change in the body’s metabolic state in which the body burns primarily fat, not sugar, for energy.

In this book, Freeman, who since 1969 has used the diet to treat hundreds of children with epilepsy at Johns Hopkins Hospital in Baltimore, claimed a 30 percent success rate in stopping seizures. Jim immediately contacted Charlie’s physician., Dr. Shields, who was unenthusiastic. “A lot of people had tried the diet and not had much success,” says Shields. “Myself included.”

Undeterred, Abrahams called Dr. Freeman at Johns Hopkins, then one of a few institutions besides the Mayo Clinic to administer the diet. A few weeks later Jim, Nancy and Charlie were sitting in Freeman’s waiting room. After undergoing a two-day fast to cleanse his system of sugar, Charlie began a meticulously regulated regimen of fish, poultry, vegetables and fruit enriched with hearty portions of red meat, heavy cream, butter, olive oil and other high-fat foods. On day three, Charlie’s seizures stopped. As with all patients who successfully use the diet, no one knows exactly why. “It’s witchcraft,” says Dr. Freeman, half in jest.

What experts, including Dr. Freeman and Dr. Shields, do know is that the prescribed quantities and combinations of food must be strictly followed or the diet won’t work. That’s one reason why the diet is a last resort. “It required an almost overwhelming time commitment to do it right,” says Shields.

“Even a change of toothpaste can throw it off track,” says Jim.

“At first I’d measure everything and then Jim would re-measure it,” says Nancy. “But now it takes only five minutes to prepare a meal. It’s much easier than giving him drugs six times a day.”

After wrapping Hot Shots! Part Deux in ’93, Jim (with Charlie Sheen) stopped working.

Charlie and his parents cheered on Jamie at a basketball game in January.

“They asked if Charlie would die,” says Abrahams of son Joseph and daughter Jamie.

Despite his initial skepticism, Shields has been inspired by Charlie’s success. “I said I would reassess what I think about the diet if Charlie responded to it,” he says. “And that’s what I did.” Indeed, Shields has started a ketogenic diet program—with about 40 percent success rate so far—for patients who do not respond to drugs. “It’s important to emphasize that this is not a first line of treatment,” Shields says. “As old as it is, we still know more about drugs than we do about this diet.”

The Abrahamses have made the diet a crusade; in February of 1994, they founded the Charlie Foundation to Help Cure Pediatric Epilepsy (1-800-FOR-KETO). One of the foundation’s goals is to teach doctors about the diet. With its help, 11 clinics around the country now offer ketogenic diet programs.

But the couple’s most important mission remains looking after their own little patient. Charlie will remain on the diet for another year. After that, if all is well, he will start eating other foods. Amazingly, he suffered no brain damage. Nancy says he is normal 3-year-old. “I read him a book and he finishes the sentences,” she says. “And he’s learned to climb on chairs and things.”

Jim has returned to work—but not, for now, to comedy. Instead he is producing a made-for-TV movie based on the true story of another epileptic child who was saved by the ketogenic diet. “It’s about a woman taking the medical future of her son into her own hands,” he says. “And that is certainly the moral of our story: You have to trust yourself.” When the show airs late this year, the family will be gathered around the TV—an exception to the house rule. “At night we never watch TV,” says Nancy with a smile. “We just watch Charlie.”

* KAREN S. SCHNEIDER
* JOYCE WAGNER in Los Angeles

Published in Resources

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 got the diagnosis, we were scared. You wonder why this is happening because your child doesn't deserve it. My husband and I left the hospital with a bottle of Keppra, a lot of questions, and not a lot of answers. I read the pamphlet they gave us so many times, but it was worthless. Over the next few weeks, we tried several other medications, but Geoffrey still had seizures...up to 100 in a day, but 30-50 on average. We padded our floors and got him a helmet...but we knew there had to be something more.

We started researching the ketogenic diet and talked to our neurologist about it. We found out that we could start the diet over the summer, so we made the appointment. The last week of June 2011, we started the diet. I remember lying in bed the night before we were going to be admitted. I was reading “Keto Kid” and thinking about how hard the diet was going to be and I just cried my eyes out. My husband looked at me and said “if you’re so scared and worried about doing this diet, then why are we doing it?” But I knew in my heart that it was worth a shot. It was so emotionally draining watching him have seizures and I worried about the long term effects of the medications. If there was any chance that this diet could reduce his seizures, we wanted to try it.

The next four days were absolutely horrible. We were confined to a hospital room, but most of that time was restricted to the bed. Geoffrey didn’t want to drink the fluids so we had to hold him down and squirt them in his mouth with a syringe. He was so weak and fragile looking, but he wanted to be up running around. He was hooked up to an EEG for 2 days straight…and the most discouraging part was that he was still having seizures. We left the hospital with a cooler of keto meals, 15 recipes, and the hope that the diet would start to work.

That weekend Geoffrey was sick with a fever and we took him to urgent care. He was diagnosed with tonsillitis. The doctor made me feel like a horrible parent when he asked what was in Geoffrey’s bottle and I told him diet root beer and he reprimanded me. I had to explain the diet to him and insist that they give him the shot of Rocephin rather than the routine liquid antibiotics.

On the 4^th of July, Geoffrey had his last seizure. It’s still hard for me to believe because that seems so long ago. The diet has been a miracle for us. We have been able to wean him off of Klonopin and we have begun to taper him off of depakote. I’m nervous and excited that he could be completely medication free by this time next year.

Sometimes I get emotional thinking about the diet. I feel like it has taken things away from Geoffrey…like decorating sugar cookies during the holidays, enjoying s’mores at a bonfire, or having a delicious pancake breakfast. But then I have to remind myself…it has given us so much more than it’s taken. And there are plenty of times that my husband and I are really tired at night and dread cooking the keto meals…but we do it for that blonde haired, blue eyed little boy who, like everyone else who has it, doesn’t deserve epilepsy.

Update (August 2012)

It seems like only yesterday that our son, Geoffrey, started on the Ketogenic Diet. The diet continues to be a blessing for us. Geoffrey has been on the diet for about 13 months now. Months into the diet, we thought that it was so easy. We often talked about why parents would say it was so difficult to maintain and how some would stop the diet because of it. Now that my son has been on the diet for over a year, we truly understand why parents say its difficult. Initially, my son would eat anything that we made him. After about 6 months, he started becoming picky. About 10 months into the diet, he started becoming more and more hungry and would ask for food more often. It's frustrating to see your child fussing because he is hungry and We are unable to give him more food. The only meals that he will eat now are Keto pancakes, hotdog, bologna, Keto Pizza, and Keto Cheesecake bars. The preparation of the meals is tedious and requires patience but its completely worth it! Geoffrey is completely off of 2 of the 3 medications he was on (Klonipin and Topamax). He continues to take Depakote but we are hoping to start weaning him off that medication soon. We are so blessed by this diet. No words can describe what a miracle it truly is. My son is becoming more vocal (even though he still doesn't really talk) and we contribute that to the diet and weaning off the medication. We look forward to the day when he is totally off the diet and the medications.

Published in Our Keto Kids

Saturday, 25 February 2012 23:23

Copy of Offering Hope Through the Ketogenic Diet

The Charlie Foundation to Help Cure Pediatric Epilepsy was founded in 1994 after twenty month old Charlie Abrahams, having endured multiple daily seizures, and failed every available anti-convulsant drug and one brain surgery, was cured of his epilepsy by the ketogenic diet at Johns Hopkins Hospital. The diet was undertaken despite resistance from the five pediatric neurologists he had seen.

When Charlie's parents realized that Charlie was but one of hundreds of thousands of children whose families were either not being informed, or being misinformed about dietary therapy, they started The Charlie Foundation in order to objectively provide this information and empower parents of those children, educate doctors, hospitals, dietitians, and nurses about proper implementation of the diet, and facilitate scientific research into its mechanisms.

Our progress has been significant. Today it has been confirmed in both vast anecdotal and Class 1 studies that the ketogenic diet improves most children with intractable seizures and, like Charlie, cures many. With our sponsorship, Medical Consensus Guidelines regarding the diet’s use and implementation were published in 2008. There are over 150 hospitals worldwide with ketogenic diet programs. We have additionally sponsored and run over 125 ketogenic diet seminars and training sessions, been involved in the publication of six books, produced one ABC television movie ("first do no harm"), been featured on Dateline NBC on three occasions, and been recognized in periodicals from "People Magazine," to the medical journal "Epilepsia."

Despite these efforts, the diet remains unavailable to most children. The fact remains that if a child’s seizures continue after 2-3 seizure medications have been trialed, the ketogenic diet should be considered. Today, many parents still medicate their children well beyond these guidelines and submit to other invasive procedures before learning those very children can get better by temporarily changing what they eat.

Our hope is that the information contained on this website will support educated decisions about treatment and implementation of dietary therapy for children and others with epilepsy.

Published in FAQ

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. Then everything went downhill for the next 3 to 4 weeks -- seizures came back, and even more severe than ever!

My husband and I spent a weekend in fasting and prayer -- reading through all the Scripture on healing and claiming them. But we did not see an immediate answer to our prayers.

Jon ended up in ICU with status epilepticus -- he'd have a seizure, fall asleep for up to an hour, then as soon as he started to wake up, he'd have another seizure. This went on for about 2 days. Hundreds of people were praying for Jon. Finally with massive meds by IV (Ativan and high doses of Valproic Acid) the seizures came under control. His last seizure was March 15, 2011.

We left the hospital quite shaken. Jon was now on a higher dose of Depakene -- 1000 mg a day. Over the next couple months, Jon's seizures remained under control. We suspected, however, that it was due to the increased meds, not the diet. We were discouraged and ready to quit the diet. But our neurologist (a thousand blessings on her head!) strongly encouraged us to continue the diet. She said we couldn't be sure what was causing the control of the seizures, and since the diet wasn't causing any significant harm, why not stick with it?

One thing that testing had revealed when Jon was in ICU was that he was metabolizing the meds too fast. Even when given massive IV doses of his meds, blood testing revealed that his levels were only around 25 to 30 -- a therapeutic level is between 50-100. So, his doctor was frequently monitoring his blood levels of Depakene. In June, a test showed that he was once again dipping below 50, so she increased his Depakene to 1250 a day.
This had a horrific effect on him physically -- he stopped talking again, began crying all the time, and began to manifest autistic-like symptoms again. In about a month or two, testing showed that his liver enzymes were climbing up to the 200 range. So...Jon's meds were reduced back to 1000 mg/day and the neurologist sent us to another specialist.

The new specialist reviewed all Jon's testings, MRIs, etc. and determined that the diet was probably what was working to control the seizures.
Although Jon's liver enzymes had come down somewhat with the reduced meds, they were still high, so he needed to be weaned off Depakene anyway.
So...rather than put him on a new med, we took the risk of just weaning him off the Depakene and seeing what happened. We began a very slow wean in October -- gradually...every 2 to 4 weeks, we'd reduce his meds by 125 to 250 mgs...until January 7, when he took his last 125 mg dose.

No seizures! Praise God!

We share our story to encourage parents just starting out to stick with it!
About 6 months ago, we were ready to give up on the diet, and we are so, so, so glad we didn't!! Jonathan didn't immediately show improvement, but eventually, the diet (along with much prayer) worked.

We also want to encourage parents who are considering the diet -- don't make the Ketogenic diet a "last-ditch" effort -- if I had to do it over again, I would have put him on the diet as soon as the Topamax started to fail, because we went through a horrific 2 years of uncontrolled seizures and meds with horrible side-effects. During that 2 years, Jon lost almost all his speech, had a horrible personality change, developed autistic-like symptoms and lost many motor skills and probably some cognitive ability. The diet is so much gentler on his system than the meds, and we might have avoided the regression that Jon experienced.

Today, after about 2 weeks of being completely med-free, Jon is much happier -- he giggles a lot, and he has become very affectionate and cuddly.
He was like this years ago, and we'd forgotten! We'd gotten so used to a child that was constantly agitated, in his own world, didn't want hugs. He hasn't yet regained his speech -- this is concerning. He has made good strides in fine motor skills (he's lost the hand tremors caused by either the meds or the seizures). He still gets over-stimulated easily, and does things like slapping or pinching -- behaviors he didn't have prior to the bad seizures and being on all the meds. His attention span is much better.
His eye contact has improved a lot. Jon has Down Syndrome, and already had developmental delay, but lost so much more from the side-effects of the meds and probably the seizures themselves.

Be blessed!

Published in Our Keto Kids

Thursday, 24 March 2011 17:37

Karen Ballaban-Gil

Published in Advisory Board