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 16th, 2009, the day after Brandon’s 4th 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 15th, 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 20t,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 17th 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.
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!!
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
Honest Medicine Written by Juia Schopick. Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases. Published by Innovative Health Publishing, 2010.
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 4th 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.
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.
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.