Guest guest Posted December 13, 2004 Report Share Posted December 13, 2004 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: > 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 MIchelle, What vitamins does take? Is he on any herbal supplements? Our herbalist keeps pushing for two herbs to take...I cannot recall which ones, I'll have to look them up. I just cannnot bring myself to give him more than he already takes....plus I would have to consult with his neuro first. I am weary of trying to be a detective. There is so much to consider! Luke has not been on the diet nearly as long as , only 6 months. It's just so hard when they are still seizing so often! I have asked his neuro about the meds mixing with the diet & she says the ones he is taking agree very well with the diet. In fact, we just increased his lamictal a couple nights ago. Before we started the diet, his myos were uncountable-100's near daily. That's what makes me weary to think about how he would be if not on the diet. Have you talked with his dietican about him not growing? Funny you mention his feet~Lukes' feet are really small too...but they are s-l-o-w-l-y growing. I hope you can pinpoint something for . If you try the milk thing let me know.... michelle paulson michelle101291@...> 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: > 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 Thanks ! allan banks aaacbanksy@...> wrote:it just seems to be never ending, we have been searching for 17 years! we always say - this is the last thing we are trying and then you hear of some other therapy. our matthew was pretty much like cooper, had an abscence seizure at four months, then partial seizure at 6 months, put on aeds and went downhill from there. first seizures happened around time of vaccination and he always had worse seizures after vaccines until we stopped. i would love to do a survey on a link between vaccination and the onset of childhood epilepsy (maybe i will). i know of so many cases, proving it is the hard part. matthew was born with no problems, in fact everyone commented on how healthy and advanced he was until he was put on clonazepam at 12months, then he went hyperactive and could not concentrate on anything. then he regressed, started crawling again, lost speech. we have tried all sorts of vitamins which all worked better when he was off aeds. he has been on b6 mostly 50mg 2xday, sometimes more - for most of his life. it did help as he got worse when we stopped it at various times. it is important to take it with multi b or at least a multi vitamin to get the right balance. hope you have more luck than we did, it is a lot easier these days to do research with the internet. medical tests mostly show " normal range " for us, maybe our kids need more than normal? yes, you feel like you need a degree just to work it out, but you know, half the time i don't think drs. know the answers themselves. sorry if i sound too negative but it makes me mad when i read stories like yours - i think after 17 yrs things should be a lot more advanced . on a positive note, glad to hear cooper is improving on diet. laura, please don't give up diet until you have tried it without aeds, you can read all the old posts in the archive section and get heaps of info there to help you decide. all the best. andrea. --- michelle paulson michelle101291@...> 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: > > > 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...
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