Ketogenic Diet

Take a look at the dietary therapies section of the home page. <a href="http://www.epilepsy.com/epilepsy/keto_news_august07.html">ketogenic diet news</a> Good luck! Epi_help

Hi, Recently I have researched and compared/contrasted the Ketogenic diet and the Modified Atkins diet that Hopkins Hospital began the research on. In my research on the diets I found a web site by the name of the www.Charliefoundation.org. On this site you will find information about the Ketogenic diet and, what I feel is a godsend, a DVD made by Charlie's father. The DVD introduces charlie and his family with a group of parents whose children have went into remission or their seizures and meds have been cut back by being on the diet. The children are also a part of the DVD and they are amazing. The Ketogenic diet written by Dr. Freeman and others, the 4th edition, is a great book answering all types of questions. If you do look into the modified Atkins rather than the Ketogenic diet find out if the children using the diet are losing weight on the diet. For some children it may not make too much difference but for others it could be detrimental. Deciding on which diet took a lot of thought. I had to weigh my daughters temperament? How would she react to using the modified Atkins diet and what if the diet failed? I would want to try the Ketogenic diet if the modified Atkins diet did not work. Would Raven be willing to use one diet and than another? I did not think so. We have an evaluation coming up at Stanford soon. The decision can be difficult at first but the DVD answers so many question that none of the 4 Neurologist's ever could. Raven was diagnosed approximately around March 2004. Raven was born in 1998. I now know that I observed seizures before she was 13 months but when she was 13 months old the whole family witnessed a seizure. It was just a quick rolling of the eyes and a pause in her step that repeated itself four times in a row. They were not very frequent and seemed to come when she was tired, or hungry. As she grew I noticed Raven had less interest in "learning" and more interest in drama play and phyiscal play till she was tired. Once kindergarten started the seizures worsen and so did her behavior. Of course, before school began for her she would have the classic toddler melt downs when she was tired although they were much worse than classic melt downs. No one noticed a thing in school. She was a good student although she seems to "have a hard time concentrating" she was unable to remember what to do with her homework or/and she did not have the energy to do the homework. By 1st grade, it was much more obvious that the seizures were lowering her cognition level. The teacher noticed some seizures but was unsure of what she saw. Of course, no one took me seriously or even believed what I said I saw or experienced with Raven in the mornings, afternoons after school and in the evenings. The staff treated me like a idiot or an over protective parent. Her doctor, who was our other children's pedi for approx. 14 years, told me that maybe she needed counseling or glasses. One day out of pure frustration I video taped Raven after school. Later I learned that she was very nearly in Status. I took the video to her pedi and she gave me 3 referrals. 1. eye doctor. 2. counselor and 3. a neurologist. Well her eyes were 20/20 and I skipped the counselor and went straight for door number 3. The technician was so floored by the amount of activity on the EEG that he just had to ask who her doctor was and why on earth it took so long to have the test...Raven was 1st diagnosed with Atypical absence, primary generalized seizures. I was told that she had a good chance of growing out of it and with medication she could be in remission within 2 years. I was also told that mood disorders are associated with Epilepsy in 20% of people. I told the doctor that Raven only had "rages" when she was tired after too many seizures. Since 2004 we struggled for over two years after her initial diagnosis to get Raven an IEP in school. She did not get the IEP until November of 2006 when she was in 2nd grade. I had her repeat 1st grade because after her 1st week in 2nd grade she was having seizures at school, when I picked her up and went into status for 30 minutes with the fluttering of the eyes and loss of consciousness. After struggling with the IEP process Raven got help with her math, more time to do homework without the pressure of finishing it in the evenings, more understanding for the staff (imagine needing an IEP and a diagnosis from an MD to get understanding from adults working with children). Now, the staff believed me but they still seemed resistent to me. The school secretary had the extreme nerve to tell me that "No one ever saw the seizures at school and that maybe there was something wrong in our home environment" in the most spiteful voice I have ever heard. You see when Raven repeated 1st grade, it seemed that her teacher did not notice the seizures at school anymore, yet when I spoke to the para teachers in the classroom 2 out 3 of them said they did see the seizures. May 2006 Raven was swinging in the park and I was pushing her. All of a sudden her head tilted to the side, her arms fell to her sides and she just melted off the swing. The sand cushioned her fall but she was crying when she came to, about a total of 10 or so seconds. In second grade she had another drop seizure when she was throwing something away in the cafe. When she fell her chin hit the side of the garbage can. Her friends laughed and Raven was sad. I have to say that the new Vice Principal handled it beautifully and took her around to all the 2nd grade classes so Raven could explain her types of Epilepsy. Raven felt very good about being asked if she wanted to do it and the kids were wonderful to her. Raven claims to have had two more in the year on the school yard. Raven is in 3rd grade now. School has been open for approx. 4 wks and it feels like mid year. She has more seizures at home when she is school. Strange the staff does not see seizures because her friends do on the school yard. Perhaps, they are not looking at her face so much. Her 3 grade teacher is wonderful and homework is only one to two pages, yet she is so frustrated and tired that she yells and screams that she cannot do it. So, she does it in school. She misses out on a little free time or play time. Raven is on her 8th medicine in two and a half yrs. She has taken Zarontin (has to stop from bad side effects on just a low dose); Depakote (quit due to suicidal thoughts and rages); Lamictal( although her cognition has been declining over time Lamictal seemed to worsen it. We used Lamictal alone and with Zarontin. The combo caused insomnia, sleep disturbances, and exhaustion); Zonegran( could not tolerate side effects); Trilepital (same with side effects); Keppra (horrible in combination with Zarontin, rages, exhaustion, unreasonable behavior, etc.); She is now on Zarontin and Topomax. Raven is still having rages and is extremely exhausted. She sleeps more and her seizures are worse. I count Zarontin twice because she has been able to tolerate the stomach side effects much better now that she is older. However, want her off the Topomax and so does she. We have been told that after a few wks, sometimes 2 wks or less, that if a medicine is not working and making things worse spending more time on it will not help. This advice is from 2 neurologists. 1 other neurologist said spend more time on a medicine in order to see of the side effects go away. Our next step is the Ketogenic diet. Raven is not a candidate for surgery. Her current diagnosis is Intractable Symptomatic Generalized Epilepsy; Atypical absence seizures; a few atonic seizures. Raven has the rolling of the eyes with a loss of consciousness; staring or seizures that occur when she is talking, walking, or reading; a drop seizure is always possible; she now has a repetitive tick sensation inside her cheek. We cannot see it but she feels it and it keeps her up or bothers so much she holds her cheek for an hour or more. Ravens cognition is declining and I see the difference even more every new school year. Raven is beautiful, not just through the eyes of her parents but everyone one sees her can't help but mentioning how beautiful she is. She is very popular at school. Do I see a difference between her friends and herself? Yes, I do. I fear that in a few years everyone will have grown away from Raven in terms of academics and cognition. The trouble I have is that I see how smart and clever she is. But, much of the time she cannot get her thoughts across when speaking or she has clusters of seizures that interrupt her thoughts so much that it is just to tiring to try. So much interruption to her thought process, so many distractions, to memory and thought she is entitled to her exhaustion and the decline in her cognition. It is very difficult getting services to help her because although her seizures are medicine resistant and it is obvious to anyone in her family how much help she needs to be able to function socially and prosper as an adult. The dream every parent has for their children. I know I am not alone. Sometimes I become angry that our political system and the agencies in place put up so many obstacles in front of parents trying to find help for their children. Surviving the "rages" and being told that they are not due to Epilepsy and than a new study finds out that they are or can be is so incredibly frustrating. I know that when my daughter is not have so many seizures that make her exhausted or the meds are not causing so many side effects she is clever and shining so full of light and with such a beautiful free spirit and a loving soul. If I could make a wish it would be that she could shine happily all her life. I do not wish that she be seizure free because she may never be in complete remission. We all have to go through life with some sort of difference we wish we did not have. A mole or crooked teeth it does not matter. But, if she could just be happy without discomfort, pain, or the inability to think straight I could go on happily and so could she. Lucille