Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Hi I just wanted to ask the group their opinion as we are seriously thinking of weaning our daughter, Amelie off the diet. It's not been an easy decision, having read so many wonderful and positive experiences on the site. Our daughter has been on the diet for 6 months, she has achieved good ketone levels and we have seen very little improvement( if any) in terms of seizure control. For a short time we really believed that things were improving but now on reflection we think we'd just been deluding ourselves. She has very low energy threshhold and we hate depriving her of the one thing she can do really well, eating food, she used to love meal times but now hates them. We are at a cross roads in her treatment as we know things will have to change. She is also on epilim which some parents have suggested can effect the potential of the diet. Our gut reaction is to wean off the diet and see where we stand, this route will undoubtedly lead to trials with other combinations of AED's. I'm sure you can relate to our terror in going this route. Another option might be to stay with the diet, hoping for future progress and wean off the epilim with the hope that siezures don't increase. ( Our neuro believes the epilim has been a stabalising factor on her siezures) This route would almost certainly go against his advice. Do any parents out there have experience that might inform our decision Thanks for your help best wishes adam stone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 Hi Adam, I don't have any experience that might help you as my son has only been on the diet for 2 months. So far no success but we are still adjusting so we are still hopeful. I have thought about what we would do if we were in a similar situation to yours and my thoughts would be that we would continue the diet and see if we could at least maintain where we are with no AED's. As you probably know the chances of an AED working after your child has failed 2 are very slim so I think that if we don't have much chance of controlling seizures with an AED and we can maintain where we are with no AED's and see if that helps to increase development than it is worth a try. Mike _____ From: acstone2003 Sent: Monday, September 27, 2004 4:54 PM To: ketogenic Subject: which way? Hi I just wanted to ask the group their opinion as we are seriously thinking of weaning our daughter, Amelie off the diet. It's not been an easy decision, having read so many wonderful and positive experiences on the site. Our daughter has been on the diet for 6 months, she has achieved good ketone levels and we have seen very little improvement( if any) in terms of seizure control. For a short time we really believed that things were improving but now on reflection we think we'd just been deluding ourselves. She has very low energy threshhold and we hate depriving her of the one thing she can do really well, eating food, she used to love meal times but now hates them. We are at a cross roads in her treatment as we know things will have to change. She is also on epilim which some parents have suggested can effect the potential of the diet. Our gut reaction is to wean off the diet and see where we stand, this route will undoubtedly lead to trials with other combinations of AED's. I'm sure you can relate to our terror in going this route. Another option might be to stay with the diet, hoping for future progress and wean off the epilim with the hope that siezures don't increase. ( Our neuro believes the epilim has been a stabalising factor on her siezures) This route would almost certainly go against his advice. Do any parents out there have experience that might inform our decision Thanks for your help best wishes adam stone " 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 September 27, 2004 Report Share Posted September 27, 2004 All I can say is that a lot of times you don't see what the diet can do until the drugs are gone. Before saying goodbye to the diet, so you know you have given it your best shot, I would work towards trying it drug-free , 's mom acstone2003 wrote: > Hi > I just wanted to ask the group their opinion as we are seriously > thinking of weaning our daughter, Amelie off the diet. It's not > been an easy decision, having read so many wonderful and > positive experiences on the site. Our daughter has been on the > diet for 6 months, she has achieved good ketone levels and we > have seen very little improvement( if any) in terms of seizure > control. For a short time we really believed that things were > improving but now on reflection we think we'd just been > deluding ourselves. She has very low energy threshhold and we > hate depriving her of the one thing she can do really well, eating > food, she used to love meal times but now hates them. > > We are at a cross roads in her treatment as we know things will > have to change. She is also on epilim which some parents have > suggested can effect the potential of the diet. Our gut reaction is > to wean off the diet and see where we stand, this route will > undoubtedly lead to trials with other combinations of AED's. I'm > sure you can relate to our terror in going this route. Another > option might be to stay with the diet, hoping for future progress > and wean off the epilim with the hope that siezures don't > increase. ( Our neuro believes the epilim has been a stabalising > factor on her siezures) This route would almost certainly go > against his advice. > > Do any parents out there have experience that might inform our > decision > > Thanks for your help > best wishes > > adam stone > > > > " 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 September 27, 2004 Report Share Posted September 27, 2004 Hi Adam, we are in the process of weaning our daughter Kristan off the diet. Kristan's been on the diet for just over a year now and we haven't gotten the control we wanted, she has good and bad days. She is on no meds and has done better on the diet than the drugs, but when she is having 70 seizures while on the diet, it made us wonder, why are we doing the diet if she is still going to have this many seizures. We struggled with our decision, but finally decided to wean. I wanted to commit for a year as it can take up to a year with all of the fine tuning and we believe we have tried everything we can with the fine tuning and are frustrated at seeing no results. Kristan was off all meds about a week before she started the diet and her seizures were down when we started the diet and have always been up and down since. IT makes us wonder if she would be like this on a regular diet and if she is, then why put her through the diet. We are going to see a naturopath once she is off the diet and if we find that we did have better control while she was on the diet, we will put her back on. The diet does work better if there are no drugs involved. Do you think the drug she is currently on helps, if so, keep her on it, but if she is still having a lot of seizures while on it, then why bother? This is what we went through with the drugs, so we stopped all meds. Have you tried all of the fine tuning, raising the ratio, calories, adding in MCT oil, etc. You know what is best for your child. Good luck with your decision. Satnam, mom to KRistan, 21 months Keto kid since August 2003 > Hi > I just wanted to ask the group their opinion as we are seriously > thinking of weaning our daughter, Amelie off the diet. It's not > been an easy decision, having read so many wonderful and > positive experiences on the site. Our daughter has been on the > diet for 6 months, she has achieved good ketone levels and we > have seen very little improvement( if any) in terms of seizure > control. For a short time we really believed that things were > improving but now on reflection we think we'd just been > deluding ourselves. She has very low energy threshhold and we > hate depriving her of the one thing she can do really well, eating > food, she used to love meal times but now hates them. > > We are at a cross roads in her treatment as we know things will > have to change. She is also on epilim which some parents have > suggested can effect the potential of the diet. Our gut reaction is > to wean off the diet and see where we stand, this route will > undoubtedly lead to trials with other combinations of AED's. I'm > sure you can relate to our terror in going this route. Another > option might be to stay with the diet, hoping for future progress > and wean off the epilim with the hope that siezures don't > increase. ( Our neuro believes the epilim has been a stabalising > factor on her siezures) This route would almost certainly go > against his advice. > > Do any parents out there have experience that might inform our > decision > > Thanks for your help > best wishes > > adam stone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 The corollary to that is that there is a 50% chance that the next AED will do nothing and a 50% chance that it will make things worse. Bill is@... wrote: > Hi Adam, > > I don't have any experience that might help you as my son has only been on > the diet for 2 months. So far no success but we are still adjusting so we > are still hopeful. I have thought about what we would do if we were in a > similar situation to yours and my thoughts would be that we would continue > the diet and see if we could at least maintain where we are with no AED's. > As you probably know the chances of an AED working after your child has > failed 2 are very slim so I think that if we don't have much chance of > controlling seizures with an AED and we can maintain where we are with no > AED's and see if that helps to increase development than it is worth a try. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 It is very hard to make the choice to go off the diet. You have to weigh the pro's and con's of being on and off the diet. Do you see more off the child you once new on the diet or on the meds? Is the side effects of the meds worth what little help they provide? It is hard! we took Casey off the diet after six months also and she had a complete corpus calasodomy on August the 18th of this year it was the right choice.Since the surgry Casey has said so many words we have not heard her say since she was around 2 yrs old she is now 8yrs old. We have our baby girl back although we are thinking about trying the diet again to see if we have better luck now that she does not have as many seizures and they are not as hard as before. Life is so much better for Casey she is happy now she acttually let me brush her teeth without a fight the other day. The little things really matter ! I wish you the best of luck and will keep you in my prayers Carol Casey's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2004 Report Share Posted September 27, 2004 I actually thought it was worse than that. I thought I had read somewhere that it was only a 5% chance after 2 meds. Mike _____ From: Bill Barber Sent: Monday, September 27, 2004 6:40 PM To: ketogenic Subject: Re: which way? The corollary to that is that there is a 50% chance that the next AED will do nothing and a 50% chance that it will make things worse. Bill is@... wrote: > Hi Adam, > > I don't have any experience that might help you as my son has only been on > the diet for 2 months. So far no success but we are still adjusting so we > are still hopeful. I have thought about what we would do if we were in a > similar situation to yours and my thoughts would be that we would continue > the diet and see if we could at least maintain where we are with no AED's. > As you probably know the chances of an AED working after your child has > failed 2 are very slim so I think that if we don't have much chance of > controlling seizures with an AED and we can maintain where we are with no > AED's and see if that helps to increase development than it is worth a try. " 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 September 27, 2004 Report Share Posted September 27, 2004 Please, read my corollary again, Bill is@... wrote: > I actually thought it was worse than that. I thought I had read somewhere > that it was only a 5% chance after 2 meds. > > Mike > > _____ > > From: Bill Barber > Sent: Monday, September 27, 2004 6:40 PM > To: ketogenic > Subject: Re: which way? > > > The corollary to that is that there is a 50% chance that the next AED > will do nothing and a 50% chance that it will make things worse. > > Bill > > is@... wrote: > >>Hi Adam, >> >>I don't have any experience that might help you as my son has only been on >>the diet for 2 months. So far no success but we are still adjusting so we >>are still hopeful. I have thought about what we would do if we were in a >>similar situation to yours and my thoughts would be that we would continue >>the diet and see if we could at least maintain where we are with no AED's. >>As you probably know the chances of an AED working after your child has >>failed 2 are very slim so I think that if we don't have much chance of >>controlling seizures with an AED and we can maintain where we are with no >>AED's and see if that helps to increase development than it is worth a > > try. > > > > " 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 September 27, 2004 Report Share Posted September 27, 2004 I am confused by your statement. Based on that statement there is a 0% chance that anything past a second medication will work. Mike _____ From: Bill Barber Sent: Monday, September 27, 2004 8:11 PM To: ketogenic Subject: Re: which way? Please, read my corollary again, Bill is@... wrote: > I actually thought it was worse than that. I thought I had read somewhere > that it was only a 5% chance after 2 meds. > > Mike > > _____ > > From: Bill Barber > Sent: Monday, September 27, 2004 6:40 PM > To: ketogenic > Subject: Re: which way? > > > The corollary to that is that there is a 50% chance that the next AED > will do nothing and a 50% chance that it will make things worse. > > Bill > > is@... wrote: > >>Hi Adam, >> >>I don't have any experience that might help you as my son has only been on >>the diet for 2 months. So far no success but we are still adjusting so we >>are still hopeful. I have thought about what we would do if we were in a >>similar situation to yours and my thoughts would be that we would continue >>the diet and see if we could at least maintain where we are with no AED's. >>As you probably know the chances of an AED working after your child has >>failed 2 are very slim so I think that if we don't have much chance of >>controlling seizures with an AED and we can maintain where we are with no >>AED's and see if that helps to increase development than it is worth a > > try. > > > > " 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 September 27, 2004 Report Share Posted September 27, 2004 Mike, You are 105% correct. Bill is@... wrote: > I am confused by your statement. Based on that statement there is a 0% > chance that anything past a second medication will work. > > Mike > > _____ > > From: Bill Barber > Sent: Monday, September 27, 2004 8:11 PM > To: ketogenic > Subject: Re: which way? > > > Please, read my corollary again, > > Bill > > is@... wrote: > >>I actually thought it was worse than that. I thought I had read somewhere >>that it was only a 5% chance after 2 meds. >> >>Mike >> >> _____ >> >>From: Bill Barber >>Sent: Monday, September 27, 2004 6:40 PM >>To: ketogenic >>Subject: Re: which way? >> >> >>The corollary to that is that there is a 50% chance that the next AED >>will do nothing and a 50% chance that it will make things worse. >> >>Bill >> >>is@... wrote: >> >> >>>Hi Adam, >>> >>>I don't have any experience that might help you as my son has only been on >>>the diet for 2 months. So far no success but we are still adjusting so we >>>are still hopeful. I have thought about what we would do if we were in a >>>similar situation to yours and my thoughts would be that we would continue >>>the diet and see if we could at least maintain where we are with no AED's. >>>As you probably know the chances of an AED working after your child has >>>failed 2 are very slim so I think that if we don't have much chance of >>>controlling seizures with an AED and we can maintain where we are with no >>>AED's and see if that helps to increase development than it is worth a >> >>try. >> >> >> >> " 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 September 28, 2004 Report Share Posted September 28, 2004 Well thats not right, chances are very low, like maybe 2-5% but I doubt many neuros would say 0%. Bill Barber wrote: > Mike, > > You are 105% correct. > > Bill > > is@... wrote: > > I am confused by your statement. Based on that statement there is a > 0% > > chance that anything past a second medication will work. > > > > Mike > > > > _____ > > > > From: Bill Barber > > Sent: Monday, September 27, 2004 8:11 PM > > To: ketogenic > > Subject: Re: which way? > > > > > > Please, read my corollary again, > > > > Bill > > > > is@... wrote: > > > >>I actually thought it was worse than that. I thought I had read > somewhere > >>that it was only a 5% chance after 2 meds. > >> > >>Mike > >> > >> _____ > >> > >>From: Bill Barber > >>Sent: Monday, September 27, 2004 6:40 PM > >>To: ketogenic > >>Subject: Re: which way? > >> > >> > >>The corollary to that is that there is a 50% chance that the next > AED > >>will do nothing and a 50% chance that it will make things worse. > >> > >>Bill > >> > >>is@... wrote: > >> > >> > >>>Hi Adam, > >>> > >>>I don't have any experience that might help you as my son has only > been on > >>>the diet for 2 months. So far no success but we are still > adjusting so we > >>>are still hopeful. I have thought about what we would do if we > were in a > >>>similar situation to yours and my thoughts would be that we would > continue > >>>the diet and see if we could at least maintain where we are with no > AED's. > >>>As you probably know the chances of an AED working after your child > has > >>>failed 2 are very slim so I think that if we don't have much chance > of > >>>controlling seizures with an AED and we can maintain where we are > with no > >>>AED's and see if that helps to increase development than it is > worth a > >> > >>try. > >> > >> > >> > >> " 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 September 28, 2004 Report Share Posted September 28, 2004 I agree it isn't 0% because I know of people on the Infantile Spasms group that have had success with 3rd, 4th, 5th, etc. meds. Mike _____ From: mmc@... Sent: Tuesday, September 28, 2004 10:07 AM To: ketogenic Subject: Re: which way? Well thats not right, chances are very low, like maybe 2-5% but I doubt many neuros would say 0%. Bill Barber wrote: > Mike, > > You are 105% correct. > > Bill > > is@... wrote: > > I am confused by your statement. Based on that statement there is a > 0% > > chance that anything past a second medication will work. > > > > Mike > > > > _____ > > > > From: Bill Barber > > Sent: Monday, September 27, 2004 8:11 PM > > To: ketogenic > > Subject: Re: which way? > > > > > > Please, read my corollary again, > > > > Bill > > > > is@... wrote: > > > >>I actually thought it was worse than that. I thought I had read > somewhere > >>that it was only a 5% chance after 2 meds. > >> > >>Mike > >> > >> _____ > >> > >>From: Bill Barber > >>Sent: Monday, September 27, 2004 6:40 PM > >>To: ketogenic > >>Subject: Re: which way? > >> > >> > >>The corollary to that is that there is a 50% chance that the next > AED > >>will do nothing and a 50% chance that it will make things worse. > >> > >>Bill > >> > >>is@... wrote: > >> > >> > >>>Hi Adam, > >>> > >>>I don't have any experience that might help you as my son has only > been on > >>>the diet for 2 months. So far no success but we are still > adjusting so we > >>>are still hopeful. I have thought about what we would do if we > were in a > >>>similar situation to yours and my thoughts would be that we would > continue > >>>the diet and see if we could at least maintain where we are with no > AED's. > >>>As you probably know the chances of an AED working after your child > has > >>>failed 2 are very slim so I think that if we don't have much chance > of > >>>controlling seizures with an AED and we can maintain where we are > with no > >>>AED's and see if that helps to increase development than it is > worth a > >> > >>try. > >> > >> > >> > >> " 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...
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