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 to remember the period of our lives that followed. It was very, very dark. I felt like I was being kicked in the stomach all day and night, every day. In the first four months of John’s life, he tried six medications, and they all failed to control his seizures. Meanwhile, his seizures became more severe, generalizing into tonic-clonics. They were mercifully short (under 60 seconds), but very frequent (10-20 a day). At four months old, he also experienced near total developmental regression, losing the ability to roll over and, most painfully, losing his cheerful personality. For several months, he would rarely make eye contact, smile, or show interest in anything. In February, we started the ketogenic diet. It took two and a half months for us to work through the many issues that arose with the diet: extreme difficulty achieving good ketones, fluctuating Phenobarbital levels, newly discovered food allergies, and a keto team that was ready to give up. But we worked through each issue, and with the help of Dr. Kossoff and Beth Zupec-Kania, found a new dietitian who helped us put our son on a form of keto called an MCT Oil Diet. I can tell you the exact hour when the ketogenic diet started to work, two and a half months after we started. John was sitting next to me in his carseat. I noticed that he was moving his arms and legs more like a normal child. When I put my hand out to him, he actually reached out to grab it. I could see a light in his eyes and his old familiar, smiling, laughing, interactive personality was back. Over the next two days, he started to play with toys for the first time, lost his head lag, and sat up on his own briefly. Within 48 hours, the Ketostix showed that he was finally making large ketones. The ketogenic diet gave us our baby back. It was extremely challenging and had some unpleasant side effects, including that John stopped eating completely and had to have a feeding tube placed. But for many months, the diet gave us a happy, interactive, developing baby instead of a zombie. The diet never completely controlled John’s seizures, but by the time he was a year old, the team at the Cleveland Clinic identified the cause of his seizures: cortical dysplasia in his left parietal lobe. He had resective surgery on November 1, 2010, at the Cleveland Clinic and has not had a seizure since.

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 saygılar English translation When our daughter Elmas was just 8 months old we were able to see imbalance, vision problems and seizures that began with what appeared to be daydreaming. By the time she was 15 months old and walking, we could clearly see that she was having difficulty with balance, fatigued easily and could not concentrate at times. She was then diagnosed with myoclonic astatic epilepsy and took a number of medications including valproic acid (depakenr, convulex), clonazepam, luminatten, lamotrigine (lamictal), oxcarbazapine (trileptal), cortisone, levetiracetam (keppra), flunarizine (sibelyum), unfortunately none of these medications worked. Her diagnosis was then changed on 05/25/2009 to a glucose transport defect and she was placed on a ketogenic diet. She responded with moderate improvement compared to past treatments, unfortunately the valproic acid she had taken did more harm than good. We were also unable to obtain the formula called KetoCal that she should be taking since it is not available on the market (in Turkey). It is difficult getting treatment for her since it is not a well known illness and doctors are unfortunately not as knowledgeable on the subject. Please pay attention to not give your children any foods such as green tea, chocolate, coke and coffee since they seem to exacerbate this illness. My daughter is now 15 years old yet her vocabulary is at that of a 10 year old and her hand eye coordinatation is equivalent to that of a 5 year old, all because we were unable to diagnose her early on and provide her with the care she has need. Let us please try harder to inform everyone out there especially the physicians. May god help us all, respectfully yours.

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 I witnessed and it went downhill from there. We were able to get the "Big Stuff" (big seizures) under control, but it was the little stuff that we couldn't get under control with anti-seizure medications. Chase has since been diagnosed with Doose Syndrome and was having hundreds of drop attacks daily...these were dangerous as he would just buckle and his face would plant into the table, his bike handles, the sink...you name it, his face planted into it and he eventually just found the couch his "safe zone." HEARTBROKEN, we proceeded to seek other treatment as he had failed 3 anti-seizure medications and was allergic to a 4th. Working in cardiac care, when we learned about the high-fat ketogenic diet our initial was a big "HELL NO." HOWEVER, we were determined to to get our boy back! This drooling, non-communicating, non-social little man was not our Chase (still makes me tear up to think about it). We started the diet in the Spring of '09 and have found ourselves asking why we didn't start sooner. He was seizure, and MEDICATION FREE for over a year. We've had some set-backs here and there, but diet has mostly been the answer. (He is on a small dose of meds right now but we are trying to wean off of them). This is not fun, but when you see that glimmer in your child’s eye, that smile or desire to play again...it is ALL WORTH IT! HANG TIGHT! Look "UP" for guidance...HE is there!

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 had ever seen and I was terrified. My husband and I both went to the pediatrician. The doctor put Eliana on the examining table and lifted her up by her arms. Eliana's head flopped backward and the pediatrician said, "Her head control is terrible." I heard nothing after that. I left the room and went into the hallway where I leaned against a wall and cried hard. One of the tests recommended was an EEG. The doctor said the strange movements could be seizures. Seizures? I thought seizures were all-out convulsions. I never knew they could be as subtle as a head bob. The drug of choice to treat infantile spasms is a corticosteroid called ACTH. It has horrendous side-effects. The worst thing about ACTH was that it didn't really help the seizures much. They never stopped. The EEG was modified only slightly and her development seemed to be going backward. We were all miserable and there seemed to be very little hope. Tegretol was next. Nothing helped. I saw some information about the ketogenic diet. I went to the medical library at our local hospital and read all I could get my hands on about the ketogenic diet. The diet was a very old treatment and had fallen into disuse somewhat. The books I was looking at were from the 1920s. It definitely didn't seem mainstream treatment any more. We tried it... My parents were visiting from Europe after Eliana had been on the diet for over a month. We were all sitting in the living room when suddenly my father said, "I haven't seen Eliana have a seizure today." We looked at each other, startled. "Jan, have you seen her have one?" "No," I said. "Frank, how about you?" He had not. Mom had not either. We barely dared to breathe. Could this be the miracle we had been hoping for? 17 years later we KNOW it WAS. Eliana surpassed all expectations.

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 little slower than typical, which was contributed to prenatal drug exposure and hydrocephalus. At 10 1/2 months of age he had his first seizure, February 9, 2007. His grandparents had no idea what was coming in the next year. By 15 months of age, Jacob had been on 7 seizure medications, most at the highest dose recommended for a 6 year old, and continued to have multiple seizures daily. When Jacob seized, he went completely floppy, turned blue and vomited. When Jacob was 16 months old he had a cluster of seizures and had to be air-lifted to Children’s Hospital in Dallas. Grandparents stopped counting the seizures at 32 within the first 20 minutes it took to get help. This is the beginning of his Keto journey. At 18 months of age, Jacob had another cluster of seizures. Unfortunately after this second episode Jacob lost all of his abilities (motor and seemingly cognitive). That is when Jacob came into my life. I am the occupational therapist his grandparents sought out after that second cluster. When I met Jacob he was completely floppy and generally unresponsive. Jacob was still on high doses of 5 seizure meds. Grandparents were doing their best with the 3:1 diet plan. Jacob touched my heart the first moment I saw him. Four months into treatment his grandmother asked if I would consider adopting him...AND I SAID YES! Six months later October 2008, he came home with me. He was on 3.5:1 diet plan, and his seizures were down to 3-5 significant episodes weekly. Soon I tried the 3.75 diet plan and was able to get Jacob down to 3 seizure meds with only a few seizures a week. Then on to the 4:1 diet plan and 2 meds. February 9, 2009, less than 2 months into the 4:1 ratio, (and exactly 2 years after his first seizure) Jacob had his last seizure! Jacob enjoys seeing his grandparents (now late 70's) who play with him almost daily. He loves being rocked by NeNe and strolling with PaPa. Jacob absolutely loves being outside, especially with the wind in his face. Jacob continues to be seizure free in June 2010! He is a very active, social little guy that still loves music. He has such an amazing personality and is developing his own opinions. Jacob continues to struggle with motor skills and cognitive learning, but because of KETO he is communicating with others, playing with toys, has friends....enjoying the life of a seizure free 4 year old!

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 after she had gone into a cluster of 14 seizures in 2 hours, and had to be given IV Ativan (Which makes her hallucinate) that we would be putting her on the Ketogenic Diet. I couldn't fathom another drug to try... what side effects would come from it next? She was initiated on the diet 1 year ago. When she started the diet she instantly stopped having seizures and went 30 days with no seizures. And then she started seizing every 2 weeks. We learned that in our hospital where they were doing the diet, that they were not doing it correctly. So we switched to a Children s Hospital and reinitialized the diet correctly. My daughter is now almost 6 months SEIZURE FREE. We NEVER imagined this day would come! And now they are talking about possibly weaning down on some of the seizure medication she is on, since she is at max dose with Keppra and Depakote. The only regret I have is not doing the diet after the second failed med. I was told it was too hard to do, that every parent quits it... I just wish that it was an option given so easily as a medication. This diet has given my daughter her life back. We havent been to the hospital for a seizure in 1 year! I thought I was going to lose my only daughter, my baby girl... and the Ketogenic Diet has given her a chance at life!

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 not improve her seizures. A third drug was added, which resulted in more side effects with improvement in seizures for a short period of time but the seizures returned. I found on the internet that Dr. Bachańskim at the Polish Health Center in Warsaw provided the ketogenic diet. She has been on the diet for several months and has not had any seizures. It is as if the disease literally "fled"!

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 months and is down to half a dose of one med. His verbal abilities have returned and he is doing great academically. He will go off the diet or med December 2010 and will be med and diet free some time after that. The diet is a miracle, we are so fortunate our neurologist believes in it and that the Charlie Foundation is here to support parents on the journey to use it. I will admit it is a commitment, it takes time and can be frustrating but so are seizures and you can't plan around seizures like you can the diet. Aaron does such a great job on the diet. I thought starting school could be a real challenge but all has went well. He still has some behavioral issues but it is such a blessing to have him "back". I would never wish the diet on any child but I feel so blessed that we were told about it and that it worked so well. Aaron talks all the time about what he will eat when off the diet but he is willing to wait knowing no seizures is worth all the sacrifice he has had to make.

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 possible solution, Megan was taken to the EEG video monitoring room where she was observed and wired up to a big camera that followed her everywhere. This lasted for three days. After these three days, Dr. Freeman and team decided that she was not a candidate for hemispherectomy. He called her into a big conference room and said “Megan, how would you like not to have surgery... how would you like to get off your medications and get rid of seizures?” Megan replied “Great” Dr. Freeman asked her “How tough are you?” She said “pretty tough” (Up to that time the Ketogenic Diet had not been tried on children age 10 an up. Since 1988 Megan’s story has been able to offer hope to other teenagers and their families and many have tried the diet) He explained that it would be a very hard diet to stay on. And that I would have to be strong and determined to say “no “ to my friends when they offered me anything that had sugar in it like candy or other items such as breads ect… Megan thought, ”You don’t need that scary surgery and need to have the opportunity for a normal life”, and then stuck out her right hand and shook Dr. Freeman’s hand saying “You’ve got yourself a Texas Deal” We stayed a week in total after our deal and I learned certain details about the Diet from Mrs. Millie Kelly the capable nutrition dietitian. Afterwards we flew back to Texas and settled into our family routine again and began the diet in earnest. As Dr. Freeman said many years later to me, “Every time I offer a kid The Diet, I think of you and our Texas deal” In 2009, Megan will celebrate 20 years seizures free because of the Keto Diet that worked in a fantastic way! Megan now 31 years old lives in Carrollton, Texas and enjoys: writing, cooking, managing her company Collectible Profiles Inc. She reads several books a week, and is an avid movie fan.

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 diet. After months of seizures—more than one-hundred per day—he finally prescribed the diet. Christina’s life was put at risk when the diet wasn’t administered properly and a deadly metabolic disorder was misdiagnosed. In an effort to save Christina’s life, we took her to Mayo Clinic 1,200 miles away. A second MRI found a lesion in her right temporal lobe, previously missed. Surgery was not an option due to generalized seizures. The only hope was seizure control. The diet proved a success, and we had one month seizure-freedom. After returning home, an illness required IV fluids, but the wrong solution was given and seizures returned. Unable to gain seizure control again by the time Christina was 2½ years old she was autistic, and did not speak. We continued to believe in the Ketogenic diet and knowing that fasting and prayer go together, we prayed for her healing. The diet again controlled the seizures, and two years of seizure-freedom paved the way for brain surgery. Today, Christina is 12 years old and seizure-free. She made honor roll last quarter, plays basketball, and all special educational assistance has been removed.