Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 7/17/00 11:55:50 AM Eastern Daylight Time, rjatkins@... writes: << I am new to this group and wanted to introduce myself. My name is and I live in central Indiana. What a surprise to find so many other people whose lives are being controlled by this bugger--chronic pancreatitis. >> Hi , welcome to the group. I a fairly new also but I have learned so much. I have pancreas divisim and in the process of having stints put in my small duct preparing me for the puestow surgery which I am not sure yet that I will go through with it or if my doctor will want me to go through with it since I am unable to eat with the stints in. I was supposed to be able to eat while the stints were in. I hope you learn what I have learned and more. I print the mail I think would be beneficial to me now or down the road. Talk to you later, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 07/17/2000 11:55:52 AM Eastern Daylight Time, rjatkins@... writes: << Hi all, I am new to this group and wanted to introduce myself. My name is and I live in central Indiana. What a surprise to find so many other people whose lives are being controlled by this bugger--chronic pancreatitis. >> , welcome to the group! I'm also from Indiana (Brown County). Welcome! Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 7/17/00 3:55:54 PM !!!First Boot!!!, rjatkins@... writes: << I am new to this group and wanted to introduce myself. My name is and I live in central Indiana. I am finding the postings here quite educational. The expressions of empathy and support are so genuine! I haven't been hospitalized with an acute attack for 2 years. However, that last round of attacks left me unable to work or do much else I had done before. >> Hello , Welcome. I am glad that you are finding the posts to be helpful. I am more so glad that you feel the true sincerity of the members of this Network. Hooray! that you have not been hospitalized for the last two years. We all certainly look forward to knowing what you do to stay out of the hospital. What city do you live in? There are about 10 members on-line and off that live in or around Indianapolis. Again, welcome, Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 07/17/2000 9:41:44 PM Eastern Daylight Time, jang2@... writes: << What is it with Indiana? Is it something in the water? It seems like there are many, many of this group from Indiana, or at least the midwest. jang >> :-) That's just what I was wondering! Helen (Indiana) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 -- >Hi all, > >I am new to this group and wanted to introduce myself. My name is and I live in central Indiana. Hi , welcome to the group. What is it with Indiana? Is it something in the water? It seems like there are many, many of this group from Indiana, or at least the midwest. jang --== Sent via Deja.com http://www.deja.com/ ==-- Before you buy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2000 Report Share Posted July 19, 2000 Hi Jang I think you are right-must be the water in Indiana, so I quit drinking it!! LOL I must confess though-I have never been a big water drinker-maybe it soaked through my skin in the shower. ha ha ha Have a good one! (Indy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi Greg, I haven't seen anyone answer your post yet. I think the best starting point for learning more about the diet is to get a copy of the book: The Ketogenic Diet: A Treatment for Epilepsy by M Freeman, M.D. (third edition). You should be able to buy it online at www.amazon.com or www.half.ebay.com . Once they've read the book, all the information on this website will make a lot more sense. The files section of the home page for this group also contains a lot of information for getting started. Patti, mom to Katera, age 5..... Keto Kid since 10-10-2000.... med-free, virtually seizure-free (only two seizures in the past full year). hi Hello, I'm new to this site & my 3 year old nephew has epilepsy & my sister was suggested by her doctor to try the ketogenic diet. I have read what it is & does but need some info on the actual diet itself, foods, preparation, etc. Thank you, regards, greg clark " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 ok group i have a question my child has been on the diet for over 5 years now. the first year he went with no tonic clonic seizures. still had jerk seizures and absence seizures. he was taken off the depokote but was still on neurontin and tegratol. actually depokote was dc'd because of nephratic syndrome he wasnt absorbing it so they said may as well stop it. well he went several months off the depokote and jerk seizures were constant, all day. when the nephratic syndrome was taken care of we put him back on depokote. when he went into hospital from gi dismotility he was taken off keto diet because they could not feed it to him via tpn. he went into status several times while off the diet. now that he is home and on the diet again, he continues to have tonic clonic seizures maybe once or twice a week. he is also having some " neurological " activities that i dont know what to call......my question is..... we never ever tried to stop all the drugs. would you do this even if the child is not seizure free? my other question is has anyone else stayed on this diet past the 3 years? obviously the diet helps him since he is much better on it, as evidenced by status when diet was stopped. but i do worry that the gi problems may be connected to the diet? first he was vomiting, the doc did fundo, now stomach isnt working at all, docs put in J-tube....this isnt getting better i know but i want to be sure i try everything there is to try. what do you all think of weaning him off all the drugs at this point? or weaning him off the diet at this point? thx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 I see Patti posted you, too. I would very strongly recommend two things: 1) getting him off meds as quickly as possible; and, 2) getting him on the ketogenic diet. These meds have some pretty horrible side effects for kids that are often not acknowledged by the medical community. Most of them are tested on adults, not kids, and, as with most things, kids simply react differently -- especially kids who are prone to neurological issues. It's a very good sign that she has a neuro who's actually recommending the diet to her -- usually it's the other way around (the family begging the neuro to put the child on the diet). As Patti mentioned, the best place to start is by reading the book, " The Ketogenic Diet: The Epilepsy Diet Treatment, " by Freeman, M.D. Lots of good info in the files at this site, too. And, great resouces with all of the knowledgeable people on this list. The more specific your question, the more likely you are to get good responses. Essentially, the diet is calculated with exact calories and a ratio of fat:protein/carb. It's very high in fat and the principle is that you're burning ketones for fuel, rather than glucose. Here's an example of a typical days meals for , my 7-year-old: Breakfast -- eggs mixed with butter, applesauce Lunch -- chicken or salmon salad or turkey with vegies and dip, a little fruit, lettuce salad Dinner -- chicken, salmon or turkey hot dog, fruit or vegies, lettuce salad with " dressing " (primarily mayo), ice cream (frozen, flavored whipped cream) Snacks -- peanut butter cookies and " milk " (diluted cream) I know when we were considering the diet, I just wanted someone to " show " it to me. . . it doesn't really work this way, but hopefully the above example will give you an idea of the types of foods. Good luck with your search. . .this can be a wonderful option for your nephew that can actually " heal " his brain, as opposed to masking the symptoms with heavy-duty drugs.--DeEtte, Mom to and , sdale, AZ --- technicokid wrote: > Hello, > I'm new to this site & my 3 year old nephew > has epilepsy & my > sister was suggested by her doctor to try the > ketogenic diet. I have > read what it is & does but need some info on the > actual diet itself, > foods, preparation, etc. > > Thank you, regards, greg clark > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 I would say you have two big things left to try...... weaning off all drugs (Tegretol, for one, is notorious for increasing seizures.... it sure did for my daughter) is certainly worth a try. You can sometimes never get completely seizure free until the drugs are gone. There's a number of parents on this list that can attest to that. The other thing is..... well, first I should ask... what ratio is he on at this point? If he's having GI problems and is on a very high ratio, I'd suggest lowering it. Many kids have problems with the high ratio but actually can stay in good ketosis at a much lower ratio after 8 or 9 months on the diet. Reflux issues, etc. are far less frequent with lower ratios......and risk of kidney stones is far less, too. It really depends on the kid .... some actually get better control with lighter ketones, too. Patti Re: hi ok group i have a question my child has been on the diet for over 5 years now. the first year he went with no tonic clonic seizures. still had jerk seizures and absence seizures. he was taken off the depokote but was still on neurontin and tegratol. actually depokote was dc'd because of nephratic syndrome he wasnt absorbing it so they said may as well stop it. well he went several months off the depokote and jerk seizures were constant, all day. when the nephratic syndrome was taken care of we put him back on depokote. when he went into hospital from gi dismotility he was taken off keto diet because they could not feed it to him via tpn. he went into status several times while off the diet. now that he is home and on the diet again, he continues to have tonic clonic seizures maybe once or twice a week. he is also having some " neurological " activities that i dont know what to call......my question is..... we never ever tried to stop all the drugs. would you do this even if the child is not seizure free? my other question is has anyone else stayed on this diet past the 3 years? obviously the diet helps him since he is much better on it, as evidenced by status when diet was stopped. but i do worry that the gi problems may be connected to the diet? first he was vomiting, the doc did fundo, now stomach isnt working at all, docs put in J-tube....this isnt getting better i know but i want to be sure i try everything there is to try. what do you all think of weaning him off all the drugs at this point? or weaning him off the diet at this point? thx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 MDubit@... wrote: > we never ever tried to stop all the drugs. would you do this even if > the > child is not seizure free? my other question is has anyone else > stayed on > this diet past the 3 years? obviously the diet helps him since he is > much > better on it, as evidenced by status when diet was stopped. I won't give you any advice on the drug issue. I can tell you we have been on diet over four years, some kids on the list have been on five years, I think there is one kid been on all his life (glucose transport disorder) and he is 9 or older now. As far as the side-effects, we have some issues too, in 's case peeing out so much calcium, so we monitor her kidney function and bone density. So far we are doing okay. All I know is this, if a drug was controlling or significantly helping to control seizures and side effects were livable, I don't think I would live to see the day when a dr would suggest discontinuing to try something else. I think society just has too much of a food hangup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 ty for your input. i dont think hassan's doc will go for idea of drug withdrawal either. and frankly it scares me to do anything with him lately because he has been so fragile. hassan spills protein in his urine so we see nephralogist too...but i guess we have to weigh all the side effects including those of the diet and his meds with the alternatives Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 on 06/04/2002 9:41 PM, MDubit@... at MDubit@... wrote: has been on since 11/96. Currently med free again. She is on a 3:1 ratio. We are keeping her on because she is well controlled . Robbie mom to 15yo ketokid > ok group i have a question > my child has been on the diet for over 5 years now. the first year he went > with no tonic clonic seizures. still had jerk seizures and absence seizures. > he was taken off the depokote but was still on neurontin and tegratol. > actually depokote was dc'd because of nephratic syndrome he wasnt absorbing > it so they said may as well stop it. well he went several months off the > depokote and jerk seizures were constant, all day. when the nephratic > syndrome was taken care of we put him back on depokote. when he went into > hospital from gi dismotility he was taken off keto diet because they could > not feed it to him via tpn. he went into status several times while off the > diet. now that he is home and on the diet again, he continues to have tonic > clonic seizures maybe once or twice a week. he is also having some > " neurological " activities that i dont know what to call......my question > is..... > we never ever tried to stop all the drugs. would you do this even if the > child is not seizure free? my other question is has anyone else stayed on > this diet past the 3 years? obviously the diet helps him since he is much > better on it, as evidenced by status when diet was stopped. but i do worry > that the gi problems may be connected to the diet? first he was vomiting, the > doc did fundo, now stomach isnt working at all, docs put in J-tube....this > isnt getting better i know but i want to be sure i try everything there is to > try. what do you all think of weaning him off all the drugs at this point? or > weaning him off the diet at this point? > thx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 I have not been getting any emails, all of a sudden they stopped Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2003 Report Share Posted July 23, 2003 welcome marybeth & congrats on this new chapter in your life. re your worried friend, can you take her to an in-person support group so she can ask the health professionals or post-ops all the ?s on her mind? lori h. > Hi > My name is beth, I am new to the group, and have been reading > post for about a week. So I am writing alot to introduce my self and > add my comments to somethings I have read. > > My surgery date is 8/28 I weigh around 368 am 5 foot almost 3 inches > and 39 years old. I am excited and nervous all in one. I have had > and easy time getting my approval done (even if it did take 6 months > to get the first Dr. appointment. It only gave me more time to > think). > I am also fortunate that my immediate boss is very excited for me and > is trying to find work that I can do at home in order to not use up > all my vacation time in recovery. > > I am doing this surgery for me. In some regards I have tried not to > let my weight stop me, last year I took ballroom dancing lessons, I > still sit on the floor and most days get up (lol). I wear a swim suit > and shorts (I have smaller friends who won't do this). I did decide > because I want to walk in to a store and be able to find things that > fit besides accessories. To get in a friends car and buckle the seat > belt, and not have my mother afraid to have me sit on some of her > furniture. > > My mom is a strong opinonated women and to deal with that I did not > tell her until after my initial consult visit. She has been very > supportive since I have told though to give her credit. I do have > one friend who is very worried and concerned. I told her I > appreciated that she cared enough to question but that I felt I > needed to do this to improve my life. > > And in closing (sorry hard to stop once I start. lol) I am grateful > to the websites out there (like this one) for us to consult encourage > and support each other. Keep up the good work Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2003 Report Share Posted July 26, 2003 In a message dated 7/24/2003 2:17:15 PM Eastern Daylight Time, tammy_t20@... writes: > I started mine Aug 28, 2002 and now being > almost 11 mo out have lost 146 lbs and just had my > tummy tuck! I have reached my goal weight of 126 lbs > and am well on my way in my new life! > Hi Tammy Jo You are living the dream girl congratulations on all your hard work and ultimate success you are and have done a wonderful job and are an inspiration to me ) Lori Anne pre-op Lap RNY 8/25/03 Quote Link to comment Share on other sites More sharing options...
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