Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 Hi gang- For whatever reason, I've been questioning the efficacy of the diet lately and wonder how much is benefiting. I'm sure some of you may wonder from time to time how your children may respond " off " the diet if their seizures are somewhat controlled or 100% controlled. I guess now I'm having some doubts whether fully adjusting to running on ketones vs. glucose. I just can't forget how not only regressed cognitively but physically after starting this diet. I don't believe in coincidence at all and just thing it's plum strange how one wk. after being on keto, he turned into a dif. kid. At first, he had huge coordination issues and lots more seizure activity. Then he started to lose words, regress cognitively, then the hypotonia started in. 's growth has also been affected. He hasn't grown (taller) in one year and has remained the same shoe size for one year. Is this normal? In addition, it seems I've recognized a trend w/him coming down w/illnesses every two wks. which bring on a seizure at the onset of the illness. Granted, we have 4 children so we are probably germ infested but this also doesn't seem normal. 's been on the diet for 1.5 years (started the diet at the age of 1.5). I guess I'm wondering if any of you can think of anything metabolically that could be going on that might have been unmasked by the diet. Hmmm.... or is it possible for the brain to just resist ketones?? I have read that though the brain naturally prefers glucose, it can adapt to ketones. Yes, I know that but something tells me this diet might have brought on whatever the underlying cause for the seizures are. I read in Freeman's book that if you are a parent who wonders how their child will do off the diet - to give them whole milk in place of the cream for 2 wks. which lowers the ratio to 3:1. If they tolerate it, wait two more wks. then give skim milk in place of the whole milk. Has anyone ever tried this? Well, thanks for listening - I just can't seem to shake the feeling that has really declined while being on the diet. The good news is, his seizures are down to one every two wks. or so (and occur between 4-6am) and the diet has allowed us to get off of medication. Do these declines seem normal? Thanks! (mom to ) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 MIchelle, You have read my mind! I am wondering the same thing regarding Luke. How much is this diet really helping him?!? He is still on meds, plus the diet, & still seizing everyday! Most days, he is able to function normally. That's what scares me, what if he would be in status whitout the diet?....I just read about subsituting the milk too, very interesting. I am anxious to read your replies! michelle paulson michelle101291@...> wrote: Hi gang- For whatever reason, I've been questioning the efficacy of the diet lately and wonder how much is benefiting. I'm sure some of you may wonder from time to time how your children may respond " off " the diet if their seizures are somewhat controlled or 100% controlled. I guess now I'm having some doubts whether fully adjusting to running on ketones vs. glucose. I just can't forget how not only regressed cognitively but physically after starting this diet. I don't believe in coincidence at all and just thing it's plum strange how one wk. after being on keto, he turned into a dif. kid. At first, he had huge coordination issues and lots more seizure activity. Then he started to lose words, regress cognitively, then the hypotonia started in. 's growth has also been affected. He hasn't grown (taller) in one year and has remained the same shoe size for one year. Is this normal? In addition, it seems I've recognized a trend w/him coming down w/illnesses every two wks. which bring on a seizure at the onset of the illness. Granted, we have 4 children so we are probably germ infested but this also doesn't seem normal. 's been on the diet for 1.5 years (started the diet at the age of 1.5). I guess I'm wondering if any of you can think of anything metabolically that could be going on that might have been unmasked by the diet. Hmmm.... or is it possible for the brain to just resist ketones?? I have read that though the brain naturally prefers glucose, it can adapt to ketones. Yes, I know that but something tells me this diet might have brought on whatever the underlying cause for the seizures are. I read in Freeman's book that if you are a parent who wonders how their child will do off the diet - to give them whole milk in place of the cream for 2 wks. which lowers the ratio to 3:1. If they tolerate it, wait two more wks. then give skim milk in place of the whole milk. Has anyone ever tried this? Well, thanks for listening - I just can't seem to shake the feeling that has really declined while being on the diet. The good news is, his seizures are down to one every two wks. or so (and occur between 4-6am) and the diet has allowed us to get off of medication. Do these declines seem normal? Thanks! (mom to ) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 Hi It's great to hear that s seizures have reduced so much being on the diet, but it is a concern to see him regress developmentally. I haven't heard of this as a side effect before. Usually you would expect improvements in cognition. I'm wondering whether there is something else going on here. Has he had an EEG since being on the diet? I wonder whether there is a lot of sub-clinical seizure activity going on? It might be worth having this rechecked, as there are conditions such as ESES and Landau Kleffner that may or may not be present with overt seizures. My daughter started off with complex partial seizures and then developed ESES, which can cause the symptoms you described. Also, is having any new foods since starting the diet? I wonder whether there could be something there that he may be reacting to. Wishing you all the best Jill At 03:38 AM 14/12/2004, you wrote: >Hi - >You know, it's soooo difficult to come up w/a direct >answer. This diet has been wonderful in that it has >given (especially) but our entire family a >better quality of life. > >My gut has always told me has a vitamin/mineral >deficiency that is causing his seizures. Problem is, >you can't test for every single vitamin/mineral. >Something happened when we put on this diet as >he regressed so fast. Up until that point, he was >100% normal. I don't know what could have triggered >the downhill spiral. > >It bugs me that we've been to countless Dr.s in 3 dif. >cities and noone actively searches for answers. They >test for whatever I tell them to test for and then say > " come back in 9 months " or whatever. > >I'd be sooo interested to see how many of our children >actually have something simple like a vitamin >deficiency that is causing seizures and delays. I've >done a lot of research on nutrition and how a lack of >specific nutrients can cause severe neurological >problems. If found, complete recovery is likely. >Unless, of course, it goes undetected for years. > >I feel like I'm on a time crunch to get to the bottom >of this. This diet is clearly not providing him with >something he needs I've just got to figure it out. > >I'm actually headed in the direction of giving him a >megadose of Vit. B6. Have read a lot about the B >deficiency's and since they work sinergistically w/one >another - if you're deficient in one - you could >easily be deficient in another. Also read stories on >line where parents have their children taking just >50mg. of B6 (standard) and then out of desperation, >and w/out support from Dr.s - give their kids >megadoses of B6 and low and behold - seizures stop. >Vit. B6 deficiency - they say -is probably hugely >underdiagnosed in kids w/seizures and/or neurological >problems. The reason is b/c Dr.s typically don't >suggest megadoses due to the risks of nerve damage. >Well... I'm desperate and am thinking seriously about >giving it a try. I just found out my father-in-law >had febrile seizures as a baby and coincidently just >been diagnosed w/Chronic Fatigue syndrome (a >deficiency in the B vit.) - this is the first >connection that I've been able to find. > >As for Luke - if you're questioning how much the diet >is working and he's still having seizures - in all >honesty - I'd try to wean him from the medication and >let the diet work solo to REALLY get a better picture. > was having 100's of myoclonics a day plus 4 >other variety's of seizures prior to weaning the meds. > Seizure wise, he's doing great - now how would >respond to a regular diet is a dif. story. A big >fear. > >So... we are off to do bloodwork tomorrow morning - am >testing for folate and B12 deficiency among other >routine tests. > >I just wish I had more of a medical background to >inquire about the possibility of malapsorption or gut >related problems. Ughh.... I just feel so close but >yet so far away. > >Thanks for responding - good luck w/Luke! > >--- hutchinson holdingontothecross@...> >wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 , Catching up on posts here. I think what you describe could be a metabolic problem. had a full metabolic work-up when we had our first keto interview. We were told that,occasionally, undiagnosed metabolic problems are the cause of intractible seizures. If that happens to be the case, they don't recommend the keto diet. I've only heard of a few other kids having this kind of testing pre-diet, but when it was explained to us, we agreed that it seemed important. The lack of growth is not uncommon on the diet, although most kids do some growing--just not what they would do under normal dietary circumstances. So, that all by itself wouldn't concern me all that much. However, the lethargy, congnitive decline, and his frequent illnesses do raise some concerns. These things do not persist on the diet. In fact, cognitive skills usually improve dramatically on the diet, even if seizures aren't completely controlled. I agree that with 4 kids your family is certainly more exposed to " bugs " than others, but it doesn't seem that has the ability to fight what he is exposed to. That may or may not be due to a nutritional issue, but I think after all this time, it's something that needs to be checked out. I'm assuming you haven't consulted a metabolic specialist (preferably one with a specialty in ped. metabolic disorders). I think I would. I don't know if the brain can " resist " ketones. My guess would be no. However, if the body isn't producing them correctly or not using them correctly then that would be a problem. 's seizures have been better on the diet though, right? I can understand your concerns and your wondering if the diet is right for . I think it's time for some further testing to see if something has been brought to light by the diet. Times like this are so hard, but you want to know what's really going on so that it can be dealt with. Prayers for you all from here. Keep us posted. Cammie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 HI , As I scrolled backwards through many of the posts I've missed recently, I just had to get to the original " Decline on the Diet " post. I'm so sad to see it came from you. You've had lots of responses, which I'll brouse if time allows. I'm sure others had some good suggestions for you. I'm baffled by the lack of congnitive progress. That goes against everything I assume about getting off meds. About the illnesses, I don't think these kids have much resistance. Ethan used to hardly ever get sick. When he struggled so much with siezures, we used to make a big deal about his strong immune system. But, he has been catching a lot of bugs this fall and winter. Sometimes every two weeks, as you have experienced. Ethan hasn't grown, either. Maybe only a fraction of a cm. This at a time when the girls in his class are all sky rocketing. Ethan looks to be years away from puberty. And he was small to begin with. But, in our case it is just the price we have to pay for the clear mind and no seizures, I guess. Hopefully, he will get off the diet before his main growing years are over. But, with you are not getting the cognitive results so it is harder to make this sacrifice. I'm all for gathering more info. I'll be curious to see what others say, but it seems to make sense to try the whole milk experiment. What about lowering his ratio to 3:1? Maybe he would do just as well on that as on 4:1. It would probably take awhile to see if that would help the cognition and growth, but you would probably find out pretty quickly about the seiszures. I'm thinking you are in the postition to make this decision better than anyone else. One of the many things I love about our nuero is that he really takes parental intuition into account in deciding upon course of treatment. (Or maybe he is just a master at making me think that!) I hope you get some answers. I'll always be pulling for . Gretchen > Hi gang- > For whatever reason, I've been questioning the > efficacy of the diet lately and wonder how much > is benefiting. I'm sure some of you may wonder from > time to time how your children may respond " off " the > diet if their seizures are somewhat controlled or 100% > controlled. I guess now I'm having some doubts > whether fully adjusting to running on ketones > vs. glucose. > > I just can't forget how not only regressed > cognitively but physically after starting this diet. > I don't believe in coincidence at all and just thing > it's plum strange how one wk. after being on keto, he > turned into a dif. kid. At first, he had huge > coordination issues and lots more seizure activity. > Then he started to lose words, regress cognitively, > then the hypotonia started in. > > 's growth has also been affected. He hasn't > grown (taller) in one year and has remained the same > shoe size for one year. Is this normal? > > In addition, it seems I've recognized a trend w/him > coming down w/illnesses every two wks. which bring on > a seizure at the onset of the illness. Granted, we > have 4 children so we are probably germ infested but > this also doesn't seem normal. > > 's been on the diet for 1.5 years (started the > diet at the age of 1.5). > > I guess I'm wondering if any of you can think of > anything metabolically that could be going on that > might have been unmasked by the diet. > > Hmmm.... or is it possible for the brain to just > resist ketones?? I have read that though the brain > naturally prefers glucose, it can adapt to ketones. > Yes, I know that but something tells me this diet > might have brought on whatever the underlying cause > for the seizures are. > > I read in Freeman's book that if you are a parent who > wonders how their child will do off the diet - to give > them whole milk in place of the cream for 2 wks. which > lowers the ratio to 3:1. If they tolerate it, wait > two more wks. then give skim milk in place of the > whole milk. Has anyone ever tried this? > > Well, thanks for listening - I just can't seem to > shake the feeling that has really declined > while being on the diet. The good news is, his > seizures are down to one every two wks. or so (and > occur between 4-6am) and the diet has allowed us to > get off of medication. Do these declines seem normal? > > Thanks! (mom to ) > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 HI - I was so sad to see the post about also...it seems that a lot of people have had some good suggestions though. Maybe someone else has mentioned this, but I was curious if was still taking the carn-a-ware? I think I remember you starting it in the spring/summer? As for the metabolic questions, I'm afraid I'm no help there. Have you had any help from the local neuro and/or Dr. Wang and Theresa? It has to be so frustrating, but you are asking a lot of good questions and if anyone can find out what's going on, I'm sure you can! Have a wonderful holiday and keep me posted. gretchen_kissock gretchen_kissock@...> wrote: HI , As I scrolled backwards through many of the posts I've missed recently, I just had to get to the original " Decline on the Diet " post. I'm so sad to see it came from you. You've had lots of responses, which I'll brouse if time allows. I'm sure others had some good suggestions for you. I'm baffled by the lack of congnitive progress. That goes against everything I assume about getting off meds. About the illnesses, I don't think these kids have much resistance. Ethan used to hardly ever get sick. When he struggled so much with siezures, we used to make a big deal about his strong immune system. But, he has been catching a lot of bugs this fall and winter. Sometimes every two weeks, as you have experienced. Ethan hasn't grown, either. Maybe only a fraction of a cm. This at a time when the girls in his class are all sky rocketing. Ethan looks to be years away from puberty. And he was small to begin with. But, in our case it is just the price we have to pay for the clear mind and no seizures, I guess. Hopefully, he will get off the diet before his main growing years are over. But, with you are not getting the cognitive results so it is harder to make this sacrifice. I'm all for gathering more info. I'll be curious to see what others say, but it seems to make sense to try the whole milk experiment. What about lowering his ratio to 3:1? Maybe he would do just as well on that as on 4:1. It would probably take awhile to see if that would help the cognition and growth, but you would probably find out pretty quickly about the seiszures. I'm thinking you are in the postition to make this decision better than anyone else. One of the many things I love about our nuero is that he really takes parental intuition into account in deciding upon course of treatment. (Or maybe he is just a master at making me think that!) I hope you get some answers. I'll always be pulling for . Gretchen > Hi gang- > For whatever reason, I've been questioning the > efficacy of the diet lately and wonder how much > is benefiting. I'm sure some of you may wonder from > time to time how your children may respond " off " the > diet if their seizures are somewhat controlled or 100% > controlled. I guess now I'm having some doubts > whether fully adjusting to running on ketones > vs. glucose. > > I just can't forget how not only regressed > cognitively but physically after starting this diet. > I don't believe in coincidence at all and just thing > it's plum strange how one wk. after being on keto, he > turned into a dif. kid. At first, he had huge > coordination issues and lots more seizure activity. > Then he started to lose words, regress cognitively, > then the hypotonia started in. > > 's growth has also been affected. He hasn't > grown (taller) in one year and has remained the same > shoe size for one year. Is this normal? > > In addition, it seems I've recognized a trend w/him > coming down w/illnesses every two wks. which bring on > a seizure at the onset of the illness. Granted, we > have 4 children so we are probably germ infested but > this also doesn't seem normal. > > 's been on the diet for 1.5 years (started the > diet at the age of 1.5). > > I guess I'm wondering if any of you can think of > anything metabolically that could be going on that > might have been unmasked by the diet. > > Hmmm.... or is it possible for the brain to just > resist ketones?? I have read that though the brain > naturally prefers glucose, it can adapt to ketones. > Yes, I know that but something tells me this diet > might have brought on whatever the underlying cause > for the seizures are. > > I read in Freeman's book that if you are a parent who > wonders how their child will do off the diet - to give > them whole milk in place of the cream for 2 wks. which > lowers the ratio to 3:1. If they tolerate it, wait > two more wks. then give skim milk in place of the > whole milk. Has anyone ever tried this? > > Well, thanks for listening - I just can't seem to > shake the feeling that has really declined > while being on the diet. The good news is, his > seizures are down to one every two wks. or so (and > occur between 4-6am) and the diet has allowed us to > get off of medication. Do these declines seem normal? > > Thanks! (mom to ) > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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