Hi, I was wondering is any of you have an experience with this type of diet. My son has epilepsy and the medication he is taking isn't working. The doctor said this might be an option. I've been researchng but the more I look the more scared I get. Has anyone heard of this or have an experience with it? Thanks, Susan
Susan : What type of diet are you talking about.? Yes my niece married a man who's sister has epilepsy and yes she is on a diet and my niece says it helps but not 100 percent. She still has epilepsy but now they are saying it's her age and she is turning into a lady so her body is changing. SO, alot of is wait and see when she is done growing. Can't really help you without knowing what kind of diet she is on. Kris TX :lol: Good luck hang in there and keep praying. It all works out in the end. You can always go get talk to another doctor. Sometimes that helps.
Right now he isn't on one, but it is an option we may look into in the future. I'm not sure if my son would qualify for the ketogenic diet because they say it really works best with younger children, the younger the better. My son is 13 and the size of his father minus the muscles so body wise he doesn't qualify as a child anymore. The Atkins diet is also a possiblity but it isn't as strong as the ketogenic diet. I did look into the ketogenic diet and reserved some books from the library and from what I'm seen it looks more like abuse than diet. It was the remedy of choice until anti-convulsive medications were made. I was just hopeing to find someone with some personal experience to see what a person would really go through on this. I know from reading that the first week the person on this diet is in the hospital because they are under a strict fasting of everything, water included. After reading about it I really don't know which would be worse the pills or the diet, they both seem pretty brutal to me.
Hi, Susan. I am familiar with the ketogenic diet, but only because I watched a movie based on the real-life case of the Reimuller family called "First Do No Harm." It peaked my interest and I did some reading on it, but I have no direct experience. The diet was pioneered by a doctor from Johns Hopkins, and has existed since the 20's. Incidentally, some of the extra people in the movie are those who have been cured of their epilepsy by this diet. It's not abusive really, when you understand the logic behind it. Most epileptic children are frail to begin with, so the initial 2-5 days of fasting are difficult, but the purpose is to make the body more receptive. Then, slowly, as high protein items are introduced, the period ot ketosis the body goes into produces quite an effect ... as I understand it. Conversely, as the movie highlighted, it's the typical medical approach to epilepsy that is abusive. They overload the body with drugs, and in the true case of the little Reimuller boy, the drugs nearly killed him and still produced no effect on his seizures. That's the reasoning behind the movie's title ... "First Do No Harm" It's a portion of the Hypocratic Oath. The irony is that they WERE harming him, in vain attempts to "cure" him. Then, when the mother discovered the diet in HER OWN research efforts, the legal system tried to take the boy away from her, claiming SHE was trying something harmful. I highly recommend the movie, even if just to see the juxtaposition of the medical field with a desperate parent. I hope you find what you're looking for, in any case. Kathe
Thank you Kathe, I will look and see if I can find that movie. I doubt if the library has it but it's worth a shot. I got two books at the library waiting for me to pick up tomorrow about this so it is still an option. My husband really hates the idea of our son taking drugs for anything especially something like this but the idea of waking up every moring with out son convulsing uncontrollably wasn't an option. Especially after his first grand mal.
It is a Hollywood movie, after all, so you may find it easier in Blockbuster or some other rental place. If it helps, Meryl Streep plays the mother, so you'll know if you've got the right movie. I sort of agree with your husband. I'm very skeptical about most drugs and wonder whether many do more harm than good. I can certainly empathize that fasting with a child 2-5 days would be excruciating. Mine eat constantly, it seems. You did mention your son is 13??? Is that right??? At least he'd be better able to understand that there's a GOOD purpose behind the fasting at that age, rather than a younger child. I hope you find all you need to make an informed choice. My best to you all. Kathe
Susan~ Seizures are very scary, as my 10 year old daughter has experienced 2 grand mal seizures in the past few months. We were told in the emergency room after the first one, that she has a condition called Benign Roladic Epilepsy- a condition that occurs in kids between 8 and 12 years old, and is usually outgrown by age 15. Then, she went in for an EEG, and her test results came back perfectly normal- not showing the typical pattern for BRE or Epilepsy. We are considering this a miracle, as after researching BRE I am sure that she had it. How long has your son had epilepsy? I pray that you can find something to keep it under control without medication. Heidi
13 yo 5'7" and 120lbs that boy is a living tree. The movie wasn't in the library, but I did find it on a site called Netflix or something like that. You can rent movies for an extended period of time for like $20 a month. I think I will read the books, not that I have any time to read :roll: , then figure out about the movie. I don't have a membership to blockbuster or anything like that so I'm kind of hanging in the air here with movies. I don't think it is a movie that would come on regular TV, I don't have cable either. Oh, well, it will all work out in the end. Thanks
No worries ... it's not like seeing the movie is going to sway you. It's just excellent for people who have NEVER heard of it before, to learn that it's based on a true story. Keep searching ... you know what is best.
Heidi, He has officially had eplipsy for about two years now, but he was having seizures for about 6 months before the doctors diagnosed him. I kept taking him in and the "idiots" kept telling me it was allergies. It wasn't until he had a grand mal in 2002 that they finally said something might be wrong :roll: . We had the MRI and EEG the week after the grand mal and everything came back normal so they said he will probably outgrow it. That is my ultimate prayer that one day he just wont have them anymore. No aura, no seizure, nothing. Right now he is hitting puberty hard and over the last year I can honestly say he has grown over a foot and probably put on close to 30 pounds so our biggest problems with the medicine is that he keeps outgrowing them :? . I'm sure it will all work out in the end. It is a major inconvience but it won't stop him from living his life -- he's too pig headed to slow down .
Kathe, Thanks. It will all work out eventually. My son is a fighter, not to mention the rest of the family so I know we will be OK with this however it turns out. We are going to the library today and I'll be getting my books. I spoke with my son last night about it and he freaked out. He told me straight to my face there is no way he is going to give up his sweets :lol:. I might be laughing about it now, but he wasn't last night. He said he might think about the Atkins diet but I can forget the Ketogenic diet. It was hillarious, I haven't seen that kind of spark in him in a long time. At least not since I plucked a bouillion (sp) cube in his mouth to stop him from asking me for the millionth time how it tasted by itself. Now when I tell him something is salty he believes me, and promptly leaves the kitchen :wink:.
I was just watching a show the other night hat covered this diet, but I don't remember which show! It had to be NewsNight on CNN or something like that. Maybe Dateline? They explained it like this- and they mentioned that movie!- The diet is fats rich, but you have to be super exact with the measurements. They interviewed a director whose son used this diet and he was able to give up his meds. His seizures stopped almost immediately. This child even had brain surgery to try to stop them. If I remember the show I saw I'll post it and maybe the content of it can be accessed on the web.
I don't have any experience with the ketogenic diet per se, but speaking as the mother of two boys with severe dietary restrictions - special diets can and do make all the difference in the world. Some may view dietary restrictions as cruel or abuse, but in some conditions, they are the best shot at controlling symptoms or treating the condition altogether. The problem is that foods can actually be poison to kids who don't tolerate them and can trigger all kinds of problems. My sons don't tolerate gluten, casein, soy, corn, bananas, vinegar, tomatoes, dyes or any chemical in our foods. Some people have thought it was cruel to withhold all these things from them, but I think it's cruel to expose them to foods that will trigger negative things to happen in their body. The ketogenic diet may seem excessive, but epilepsy can be excessive also. I know people who have had several brain sugeries and are doped out on meds in an attempt to stop the seizures. I view the repeated attempts to control the disease in this manner cruel and abusive rather than this diet - if it ends up working. Speaking from the other side of the fence...
I'm thinking the show I saw was actually Dateline, because it keeps coming up when I google the diet.
