Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 I have a consult tomorrow with my 2.5 year old son who has been haveing seizures every 5 to 7 days for the last 5 months despite being on trileptal, keppra and know zonagram. Does anyone have any suggestions for me in terms of questions I should be asking? I don't know much about the diet other than it is a high fat and low carb and protein. My son was a 26 week premi who suffered a grade 4 IVH at birth which is the cause of his seizures. I would love any suggestions as I am new to this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Dear #, If you go in on the Stanford Medical Center site on the internet there are a lot of questions and answers that might help you learn more about the diet. There is also a meal planner you can download. You need excel progam to open it though. My grandson is on the ketogenic diet for about 2 months and was in bad shape but is seizure free now thanks to the diet. Hallie consult for keto tomorrow I have a consult tomorrow with my 2.5 year old son who has been haveing seizures every 5 to 7 days for the last 5 months despite being on trileptal, keppra and know zonagram. Does anyone have any suggestions for me in terms of questions I should be asking? I don't know much about the diet other than it is a high fat and low carb and protein. My son was a 26 week premi who suffered a grade 4 IVH at birth which is the cause of his seizures. I would love any suggestions as I am new to this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Where are you going for the consultation? Maybe someone in this group has experience with the same center. Be sure to ask about the dieticians; talk to them if you can. Make sure they have a lot of experience with the ketogenic diet. This diet is tough, but really really worth the effort. > I have a consult tomorrow with my 2.5 year old son who has been > haveing seizures every 5 to 7 days for the last 5 months despite > being on trileptal, keppra and know zonagram. Does anyone have any > suggestions for me in terms of questions I should be asking? I > don't know much about the diet other than it is a high fat and low > carb and protein. My son was a 26 week premi who suffered a grade 4 > IVH at birth which is the cause of his seizures. I would love any > suggestions as I am new to this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Hi, not sure if anyone has already written this, but a v good book for you to read would be 'The Ketogenic Diet, A treatment for Epilepsy' By Freeman, Freeman and Millicent (Hopkins hospital). Very informative and encouraging, and will widen your knowledge on how and why the diet works in epilepsy. Well, kind of - cos there is still no definitive answer to that million dollar question, but I highly recommend it. Starting the diet with a drug cocktail can lead to toxicity problems, so if you are contemplating it, I would look at weaning one or more meds down, (or has he been on those meds listed one at a time only?) as so many of us attest to - if they were working enough to keep them in the mix, you probably wouldn't be looking at keto as a treatment anyway..... What type of seizures does your son have - if a generalised epilepsy seizure dIsorder, trileptal (and tegretol) can worsen some kiddies...or are his focal seizures? I have a premi child too - but she is now 10, and not the one with the epilepsy - my 7 yr old (full term, healthy as a horse till 3 yrs old) has that dubious honour There are many websites relating to the keto diet that you could read up on, if you have an specific questions, fire away, or if you need some specific links let us know too. I think there might also be some links in the files section at the home page here. Hill in NZ ----- Original Message ----- From: s38992002 I have a consult tomorrow with my 2.5 year old son who has been haveing seizures every 5 to 7 days for the last 5 months despite being on trileptal, keppra and know zonagram. Does anyone have any suggestions for me in terms of questions I should be asking? I don't know much about the diet other than it is a high fat and low carb and protein. My son was a 26 week premi who suffered a grade 4 IVH at birth which is the cause of his seizures. I would love any suggestions as I am new to this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi , Thanks for getting back to me. We had our consult at children's hospital in Boston with Dr. Bergin and she felt n should try the diet. Do you have any experience with the diet? I am so on the fence whether we should try it or not but on the other hand I am so upset every he has a seizure. I believe his seizures are focal. He had a grade 4 IVH 24 hours after birth. We have been on topamax, trileptal, keppra and just started zonagram. What if any is your experience with the diet? I am so worried to try it because it is sooooo unhealthy! Diane in Boston Re: consult for keto tomorrow > Hi, not sure if anyone has already written this, but a v good book for you to read would be 'The Ketogenic Diet, A treatment for Epilepsy' By Freeman, Freeman and Millicent (Hopkins hospital). > Very informative and encouraging, and will widen your knowledge on how and why the diet works in epilepsy. Well, kind of - cos there is still no definitive answer to that million dollar question, but I highly recommend it. > Starting the diet with a drug cocktail can lead to toxicity problems, so if you are contemplating it, I would look at weaning one or more meds down, (or has he been on those meds listed one at a time only?) as so many of us attest to - if they were working enough to keep them in the mix, you probably wouldn't be looking at keto as a treatment anyway..... > What type of seizures does your son have - if a generalised epilepsy seizure dIsorder, trileptal (and tegretol) can worsen some kiddies...or are his focal seizures? > I have a premi child too - but she is now 10, and not the one with the epilepsy - my 7 yr old (full term, healthy as a horse till 3 yrs old) has that dubious honour > There are many websites relating to the keto diet that you could read up on, if you have an specific questions, fire away, or if you need some specific links let us know too. I think there might also be some links in the files section at the home page here. > > Hill in NZ > > > ----- Original Message ----- > From: s38992002 > > > I have a consult tomorrow with my 2.5 year old son who has been > haveing seizures every 5 to 7 days for the last 5 months despite > being on trileptal, keppra and know zonagram. Does anyone have any > suggestions for me in terms of questions I should be asking? I > don't know much about the diet other than it is a high fat and low > carb and protein. My son was a 26 week premi who suffered a grade 4 > IVH at birth which is the cause of his seizures. I would love any > suggestions as I am new to this group. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Have to chime in here. Unhealthy? Hmmm. My keto kid eats veggies with every meal (my other kids eat mac and cheese and the occasional salad), my keto kid takes vitamins and supplements every day (my other kids take them when they/I remember) My keto kid eats organic whole foods (my other kids eat pretty much whatever they are hungry for and this does include organic foods etc when I can get some of the stuff into them ) Now, I dont mean to say that my other kids fend for themselves or eat junk all the time. But before the keto diet hit our household 3 yrs ago, I didnt know as much about nutrition as I know now. My kids ate from the food groups, and had juice and the occasional snack etc. but some foods are not very nutritionally dense (like iceberg lettuce) it is a good food, but not really giving you much nutrition wise when you eat it ya know? The ketogenic diet is as healthy as you want it to be. If you want to calculate 'snack' meals all the time, then the diet wont be very healthy, but if on the other hand, you want to calculate as many good foods in as you can, then the sky is pretty much the limit on what you can come up with for your child. There are some awesome recipes at the keto recipe site, nutritious and snack ones as well. Whether or not you decide to try the diet, please do not base your decision on what you percieve to be unhealthy. I am sure there are many parents here who would challenge that. My son has been on the diet for 3 years and he is as healthy as a horse (well, except for his seizures, but those are again under control for now) Good luck with whatever you decide. Jenn P.S. Do not mean to offend anyone with this email, or invoke my perceptions on anyone. Everyone has their own views on the diet and this is just mine. I do feel quite strongly that the diet is as healthy as the meals that are calculated. Re: consult for keto tomorrow I am so worried to try it because it is sooooo unhealthy! Diane in Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Got to agree with you on this one Jenn. s eats a far wider variety of vegetables than my daughter and he has been on the diet for over 2 years now and is as strong as a horse. The recent problems he has had has been down to calories and not having enough of them and then having too many - he was obviously overdue a major diet 'tweak'. Up until that time has loved all his food, thrived on the diet and there has been more improvement since being on the diet and off meds than there ever was on just meds. The other 'downside' to the diet that is frequently banded about is that it is supposedly 'unpalatable' - if you just swamp everything in double cream then yes, I suppose it would be unpalatable - but it does not need to be. Also have a look at www.sfriends.org for recipe ideas and information - there are more recipes coming together with photo's so you can see what the food looks like. No-one can tell me that those Blueberry muffins look unpalatable and wait until we get the one up for chocolate!!!! If you are in two minds about trying the diet then try looking at it this way, commit yourself for a minimum of 3 months and give it 100%. After 3 months you can re-assess things then, if you see no improvement whatsoever or you don't think it is right for you as a family then at least you can say that you have tried. Let us know how things go and the best of luck. Emma. Mum to . > Have to chime in here. Unhealthy? Hmmm. My keto kid eats veggies with every meal (my other kids eat mac and cheese and the occasional salad), my keto kid takes vitamins and supplements every day (my other kids take them when they/I remember) My keto kid eats organic whole foods (my other kids eat pretty much whatever they are hungry for and this does include organic foods etc when I can get some of the stuff into them ) > > Now, I dont mean to say that my other kids fend for themselves or eat junk all the time. But before the keto diet hit our household 3 yrs ago, I didnt know as much about nutrition as I know now. My kids ate from the food groups, and had juice and the occasional snack etc. but some foods are not very nutritionally dense (like iceberg lettuce) it is a good food, but not really giving you much nutrition wise when you eat it ya know? > > The ketogenic diet is as healthy as you want it to be. If you want to calculate 'snack' meals all the time, then the diet wont be very healthy, but if on the other hand, you want to calculate as many good foods in as you can, then the sky is pretty much the limit on what you can come up with for your child. > > There are some awesome recipes at the keto recipe site, nutritious and snack ones as well. > > Whether or not you decide to try the diet, please do not base your decision on what you percieve to be unhealthy. I am sure there are many parents here who would challenge that. My son has been on the diet for 3 years and he is as healthy as a horse (well, except for his seizures, but those are again under control for now) > > Good luck with whatever you decide. > > Jenn > > P.S. Do not mean to offend anyone with this email, or invoke my perceptions on anyone. Everyone has their own views on the diet and this is just mine. I do feel quite strongly that the diet is as healthy as the meals that are calculated. > > Re: consult for keto tomorrow > > > I am so worried to try it because it is sooooo unhealthy! > Diane in Boston > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 I fully respect your thoughts! I am new to this sight and don't know much about the diet. I don't even know any recipes but from what the nutrionist told me she said it wasn't healthy. After reading your thoughts it makes me feel better about trying it. How old is your son? What has been your experience with the diet in terms of seizure control? Diane mom n Re: consult for keto tomorrow > > > I am so worried to try it because it is sooooo unhealthy! > Diane in Boston > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Thank you for your input! I just want to do the right thing and not knowing anyone who has been on the diet makes the decision very hard. I am going to check out the site on recipes as I think that will give me an idea of what he will be eating. because as of right now the only thing I know is that it is high fat, low protein and carbs. How old is your child and have you had luck on the diet? Diane mom to n Re: consult for keto tomorrow > > > > > > I am so worried to try it because it is sooooo unhealthy! > > Diane in Boston > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.