Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Our daughter has been on the ketogenic diet since May. Initially MCT but made her acidotic and very sick, poss worsened by topiramate which was subsequently stopped. We have been in a fairly stormy fine tuning phase and since our neuro team have very little exoerience with the classical diet we are all feeling our way in the dark with it. A bit like walking through a minefield....and we've stepped on loads of mines! Our stormy yo-yoing patch continues and Mia, who is 3 and a half, went into hospital today as we were concerned we had made her too ketotic......again! She is on a 4:1 ratio, 1000 cals per day as she's poorly and inactive at present, weighs 15.2 kg, has 2.5g or less of carb per meal. 3.5 meals per day. We lost her ketones, about 10 days ago, due to being in a catabolic state because of insufficient calories secondary to vomitting and slow reintroduction of diet. However, we're at the right calorie level now, we think. We're trying to get on top of constipation with milk of magnesia, and we're keeping her nicely hydrated and not vomitting. Her ketones have steadily crept up, over the last 2 days, and she is now getting 4+ (16mmol) urine ketones most of the time with the occasional 3= in the mornings (which is O.K.). Her blood ketones however are unrecordable because they are so high!!(More than 6.0 on the Optium Medisense). But she is still having loads of fit activity...possibly a little less severe tonight. She had a blood gas checked in hospital and she is NOT acidotic or dehydrated. When she's awake she's not terribly alert, has lost her language, is unable to walk or play. All things she was doing not so long ago and when we have had periods of good ketones and fit cessation all of this has come back and she's been great. So we believe it's worth persevering with the diet, but... We are wondering about a few things: 1. Can you be knocked off because of too much ketosis or have worse fits because of too much ketosis EVEN if you're not acidotic? 2. If this is too much ketosis what's the solution? A lower ratio?? e.g.3.5:1 or something else? 3. Could her keppra be interacting with the diet? Anybody else out there have a child on keppra and the diet? 4. If we are achieving good ketones (presuming that they are not too high), how long should it take to make a difference to the fits? Do we need to just be patient and sit tight? Sorry to be asking these questions here but our professionals can't answer these for us and we are not sure where to turn or what to do next. Any answers very gratefully received. Dominic and Frances Dominic Slowie Mia's Dad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Dominic, First of all I want to say I hope you daughter sees some better days soon. Your story caught my attention as my daughter who is 5 1/2 yrs old, has similar symptoms. She went way too ketotic w/ MCT oil, we were only giving her 8g per meal, but she was vomiting, not wanting to eat, 100-200+seizure days. We gave her 1oz of OJ per her epi and dietician, which actually did bring her out of her funk. She was unresponsive to us asking her ?'s etc, refused to talk, couldn't walk by herself, or even hold herself up, looked like a little old granny slumped over. She's off the MCT oil and can stand, is a little vocal, so there is some change. We did lower her ratio to a 3.75-1 w/ no MCT oil. Her calories are close to your daughters, Stella gets 1225/day. She weighs 42lbs not sure what that is in Kilo's though. First of all, try the OJ if she gets too ketotic. Wait the 15mins and see if you notice any change. Stella's eyes seem to brighten a bit. Replace some of the MCT oil for other oil, ie... olive/canola/macadamia nut/avocado oil. Stay away from the linseed/flax/coconut for a while as these oil will raise ketones too. Other parents on here have told me that high ketones can cause seizures too, and Stella's doc agrees w/ this, some children actually do better with slightly lower than norm ketones as per normally required, and need a lower ratio. You should ask your doc these questions. What is her BHB, do you check for that? We tried Keppra a while back and it made Stella crazy, so I can't help you with that one. My instinct is to drop cals slightly, and wait a week and see how she does. Lower the MCT oil slightly/or drop all together. We go in week increments that way I have enough of a diary log to refer to. After a couple weeks of this, you may want to talk about lowering her ratio to see if it makes a difference. Best of luck amanda -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal and Diamox; finished weaning diazepam. Also, big sis Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Dominic, I feel for you. It is a near impossible task to fine tune; so many variables and unknowns. Basically all trial and error with one or two weeks needed to know if things are worse or better. And no scientific knowledge of how the darn thing works! Try to keep good records so you can look back and maybe make sense of things. In our case, weight changes were critical to calorie changes and made a much bigger difference than ratio. If you still have any meds on board then things are even more complicated. We found that the diet is just like a powerful drug and there is strong interactions between them. Anything like vomiting, constipation, sickness can throw the diet off completely until things get back to normal. We would have increased seizures then a couple of days later the illness would appear. Even 25 calories a day can make a difference. Some people do glucose testing to fine tune calories and ratio. We never did. I think there is information in the files section of the group to assist in this. With the fatigue, it sounds like it could be too high ketones, med toxicity, or poor digestion and absorption. Normally the answer for too high ketosis is a lower ratio. Drug interaction could be involved. I don't know about that and nothing about keppra. It often takes one or two weeks for things to settle down, especially if you have had stomach upset. Good luck, Bill dominicslowie wrote: > Our daughter has been on the ketogenic diet since May. Initially MCT > but made her > acidotic and very sick, poss worsened by topiramate which was > subsequently stopped. We > have been in a fairly stormy fine tuning phase and since our neuro > team have very little > exoerience with the classical diet we are all feeling our way in the > dark with it. A bit like > walking through a minefield....and we've stepped on loads of mines! > > Our stormy yo-yoing patch continues and Mia, who is 3 and a half, > went into hospital > today as we were concerned we had made her too ketotic......again! > > She is on a 4:1 ratio, 1000 cals per day as she's poorly and inactive > at present, weighs > 15.2 kg, has 2.5g or less of carb per meal. 3.5 meals per day. > > We lost her ketones, about 10 days ago, due to being in a catabolic > state because of > insufficient calories secondary to vomitting and slow reintroduction > of diet. However, we're > at the right calorie level now, we think. We're trying to get on top > of constipation with milk > of magnesia, and we're keeping her nicely hydrated and not vomitting. > Her ketones have > steadily crept up, over the last 2 days, and she is now getting 4+ > (16mmol) urine ketones > most of the time with the occasional 3= in the mornings (which is > O.K.). Her blood > ketones however are unrecordable because they are so high!!(More than > 6.0 on the Optium > Medisense). But she is still having loads of fit activity...possibly > a little less severe tonight. > > She had a blood gas checked in hospital and she is NOT acidotic or > dehydrated. When > she's awake she's not terribly alert, has lost her language, is > unable to walk or play. All > things she was doing not so long ago and when we have had periods of > good ketones and > fit cessation all of this has come back and she's been great. So we > believe it's worth > persevering with the diet, but... > > We are wondering about a few things: > > 1. Can you be knocked off because of too much ketosis or have worse > fits because of too > much ketosis EVEN if you're not acidotic? > > 2. If this is too much ketosis what's the solution? A lower ratio?? > e.g.3.5:1 or something > else? > > 3. Could her keppra be interacting with the diet? Anybody else out > there have a child on > keppra and the diet? > > 4. If we are achieving good ketones (presuming that they are not too > high), how long > should it take to make a difference to the fits? Do we need to just > be patient and sit tight? > > Sorry to be asking these questions here but our professionals can't > answer these for us > and we are not sure where to turn or what to do next. > > Any answers very gratefully received. > > Dominic and Frances > > > Dominic Slowie > Mia's Dad > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hi Thank you for this. It is reassuring to hear that we don't have a monopoly when it comes to being in a muddle! So many parents on this website seem to have had similar experiences and the volume of knowledge and experience seems vast. Mia is still in hospital but a little brighter today. We have decided for the moment that we think the ratio is the way to go because her weight seems stable and we think the calorie level probably is about right (though we are awaiting some advice from more experienced keto teams both here in the UK and in the US). Our reasoning is that there really is no doubt that she has too many ketones. So we'll see what the next few days brings. Thank you Dominic > Dominic, First of all I want to say I hope you daughter sees some better > days soon. Your story caught my attention as my daughter who is 5 1/2 yrs > old, has similar symptoms. She went way too ketotic w/ MCT oil, we were > only giving her 8g per meal, but she was vomiting, not wanting to eat, > 100-200+seizure days. We gave her 1oz of OJ per her epi and dietician, > which actually did bring her out of her funk. She was unresponsive to us > asking her ?'s etc, refused to talk, couldn't walk by herself, or even hold > herself up, looked like a little old granny slumped over. She's off the MCT > oil and can stand, is a little vocal, so there is some change. We did lower > her ratio to a 3.75-1 w/ no MCT oil. Her calories are close to your > daughters, Stella gets 1225/day. She weighs 42lbs not sure what that is in > Kilo's though. > First of all, try the OJ if she gets too ketotic. Wait the 15mins and see > if you notice any change. Stella's eyes seem to brighten a bit. > Replace some of the MCT oil for other oil, ie... olive/canola/macadamia > nut/avocado oil. Stay away from the linseed/flax/coconut for a while as > these oil will raise ketones too. > Other parents on here have told me that high ketones can cause seizures too, > and Stella's doc agrees w/ this, some children actually do better with > slightly lower than norm ketones as per normally required, and need a lower > ratio. You should ask your doc these questions. What is her BHB, do you > check for that? > We tried Keppra a while back and it made Stella crazy, so I can't help you > with that one. > My instinct is to drop cals slightly, and wait a week and see how she does. > Lower the MCT oil slightly/or drop all together. We go in week increments > that way I have enough of a diary log to refer to. After a couple weeks of > this, you may want to talk about lowering her ratio to see if it makes a > difference. > Best of luck > amanda > -- > -mom to Stella, 5years old, started keto diet May 10th 2004 still > waiting to be seizure free. Also on Lamictal and Diamox; finished weaning > diazepam. Also, big sis Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Hi Bill Thanks for this, as you'll see from last posting to , things are looking up though we're still not sure we're doing the right thing. Her ketones were off the scale and she improved with a bit of orange juice so we thought we'd be wise to lower the ratio. We'll monitor the weight carefully over the next few weeks also. Does 1000 calories a day for a 15kg (ideal weight for height 15kg also) girl sound O.K., usually active but inactive when ill. Do people lower calories when their kids are inactive? Our other conundrum is whether too many calories can actually cause too much ketosis or whether this is nearly always a ratio thing? This is all so tricky, especially seeing as our neurologists and dietician are learning alongside us! The fact that I am a physician doesn't help because they are probably more deferential to me and my knowledge than they may otherwise be, and at the moment I have too much fear and confusion to be thinking all of this through....but at present there is no alternative. Many thanks for your assistance. We are still staying optimistic as we've had two excellent fit free periods with satble ketones and good developmental progress since starting the diet so we really believe it will work if we get through this fine tuning minefield. Cheers Dominic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Dominic Haven't followed your story, or at least don't recall the details, but I can tell you that both too few or too many calories can lower ketosis - don't think I have ever hear of calorie amount causing excess ketosis though.. Have a friend who calls it the Goldilocks Syndrome, has to be just right for the individual child. Too few calories and the body will start burining its own fat to make up and that will lower ketosis. Too many calories, the body stores the excess as fat which will also lower ketosis. Since your problem was excess ketosis, I would say the ratio drop was the way to go , 's mom dominicslowie wrote: > Hi Bill > > Thanks for this, as you'll see from last posting to , things are > looking up though > we're still not sure we're doing the right thing. Her ketones were off > the scale and she > improved with a bit of orange juice so we thought we'd be wise to > lower the ratio. > > We'll monitor the weight carefully over the next few weeks also. Does > 1000 calories a day > for a 15kg (ideal weight for height 15kg also) girl sound O.K., > usually active but inactive > when ill. Do people lower calories when their kids are inactive? > > Our other conundrum is whether too many calories can actually cause > too much ketosis or > whether this is nearly always a ratio thing? > > This is all so tricky, especially seeing as our neurologists and > dietician are learning > alongside us! The fact that I am a physician doesn't help because they > are probably more > deferential to me and my knowledge than they may otherwise be, and at > the moment I > have too much fear and confusion to be thinking all of this > through....but at present there > is no alternative. > > Many thanks for your assistance. We are still staying optimistic as > we've had two excellent > fit free periods with satble ketones and good developmental progress > since starting the > diet so we really believe it will work if we get through this fine > tuning minefield. > > Cheers > > Dominic > > > > " 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 August 13, 2004 Report Share Posted August 13, 2004 , I thought even if the body burns its own fat it'll still increase ketosis. Saro mmc@... wrote: > Too few calories and the body will >start burining its own fat to make up and that will lower ketosis. >, 's mom > >dominicslowie wrote: > > > >> Hi Bill >> >>Thanks for this, as you'll see from last posting to , things are >>looking up though >>we're still not sure we're doing the right thing. Her ketones were off >>the scale and she >>improved with a bit of orange juice so we thought we'd be wise to >>lower the ratio. >> >>We'll monitor the weight carefully over the next few weeks also. Does >>1000 calories a day >>for a 15kg (ideal weight for height 15kg also) girl sound O.K., >>usually active but inactive >>when ill. Do people lower calories when their kids are inactive? >> >>Our other conundrum is whether too many calories can actually cause >>too much ketosis or >>whether this is nearly always a ratio thing? >> >>This is all so tricky, especially seeing as our neurologists and >>dietician are learning >>alongside us! The fact that I am a physician doesn't help because they >>are probably more >>deferential to me and my knowledge than they may otherwise be, and at >>the moment I >>have too much fear and confusion to be thinking all of this >>through....but at present there >>is no alternative. >> >>Many thanks for your assistance. We are still staying optimistic as >>we've had two excellent >>fit free periods with satble ketones and good developmental progress >>since starting the >>diet so we really believe it will work if we get through this fine >>tuning minefield. >> >>Cheers >> >>Dominic >> >> >> >> " 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 August 13, 2004 Report Share Posted August 13, 2004 Jay wrote: > , > I thought even if the body burns its own fat it'll still increase > ketosis. > > Saro No............Barb M had this figured out pretty good and I can't remember exactly how it works, but I do (think) I know that if too few calories are being given and you increase calories you will get better ketosis. Lets ask since she is our resident expert on catabolic states > mmc@... wrote: > > > Too few calories and the body will > >start burining its own fat to make up and that will lower ketosis. > >, 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Thanks Sue You know I really wonder.......for so many kids who initially do well on the diet and then it just mysteriously stops working after a year or more, is this whats happening for some of those kids? And at that point, as you say, even adding calories ain't gonna be a quick fix solution. So add calories, nope, that didn't work, decrease calories, no good, play with ratio, nope, sorry it just stopped working and all the finetuning in the world didn't help..... You really ought to write an article Sue.......but seriously, how aware is Hopkins of this issue? Hill wrote: > > > I'll have a go - It's one of those isn't it - no straight answer of > course... but here's how I see it and how it applied to ... > Too few cals for too long meant that once caloric fat was used up > some body fat was burnt to top up energy needs, but only to a certain > point. His body wouldn't 'let' all available body fat be burnt. His > body switched to using muscle tissue (as there was no glucose in the > blood level to top needs up, being in ketosis an' all..), a process > called catabolic gluceogenesis. The protein from muscle converts to > glucose, raises the level in the blood, which in turn lowers ketones. > At which point this process 'switches on' is an individual thing - > some kids would be skin and bone before going catabolic - > wasn't, scales showed no real change - but 'inside', his body > composition was changing - increased fat distribution, decreased lean > muscle mass = same weight but totally unhealthy with absolutely no > hight increase, and getting weaker in the process, with low waking > ketones and early am seizures. > Once someone has been catabolic for a long period (and this is > pretty rare, usually you will see some warning signs) metabolic > derangement can occur - so even when you start to right things and > give adequate cals, those cals are not neccessarily metabolised the > way you think they are - like protein, carb and fat might still be > absorbing/storing abnormally whilst the body recovers. > So both too few cals and too many can cause low ketones - too many > cals leaves too much glucose floating in the bloodstream to allow > adequate ketosis to be maintained - blood glucose is preferentially > used for energy, ie - gluceogenesis -but when this isn't available and > caloric and body fat aren't available for energy either, 'catabolic > gluceogenis' occurs - where the body isn't mimicing starvation, it is > actually literally being starved. > Glucose testing after fasting will help figure out whether either > form or gluceogenesis is occurring - like after caloric fat from a > meal is used up, if blood glucose levels go up and ketones go down > before the next meal, this would say that glucose is being produced > from somewhere rather than ketones being produced and burnt from body > fat. It won't unfortunately tell you though where this glucose is > coming from - is it from too much glucose in the blood from excess > cals, (or ratio too low so too many carbs being stored) or is it from > a catabolic process where muscle tissue is broken down. > This has to be guaged mainly from growth charts - if height is > ticking along, it is doubtful too few cals is the problem, as the body > won't grow in height if there is not enough fuel being given. > Survivial comes first, growth second. A dexa scan will then show if > the the body compostion has changed, in 's case it def had. The > endo was actually able to look at his growth charts and tell us > roughly at which point his catabolic process probably kicked off. > The biggest mistake we made was not increasing calories as he grew - > which he did initially on the diet. Bigger body mass meant he had > needed more fuel, we didn't pick up the signs. > An added complication too that can occur with catabolism is that the > body goes into stress, meaning stress hormones are released, all of > which are glucose producing. Even when ketones are at an ok level, if > high glucose levels co-exist, then the glucose will be used > preferentially over the equally available ketones. So seizures as the > body switches between the 2 metabolic processes can remain a mystery > unless regular blood testing is done to see a pattern developing. > Urine ketones will not give an accurate picture of where the blood > ketone and glucose levels were at the time of the seizure. > Clear as mud? > Basically, if cals are set correctly and growth ticks along (usually > at a slower rate on the diet, but shouldn't be total standstill) with > no dramatic fluctuations in blood ketones or glucose, and no > substantial weight gains or losses, then you can be pretty sure that > no gluceogenesis process is occurring. Er, I think... > > > > ----- Original Message ----- > From: mmc@... > > Jay wrote: > > > , > > I thought even if the body burns its own fat it'll still > increase > > ketosis. > > > > Saro > > No............Barb M had this figured out pretty good and I can't > remember exactly how it works, but I do (think) I know that if too > few > calories are being given and you increase calories you will get > better > ketosis. Lets ask since she is our resident expert on > catabolic > states > > > > mmc@... wrote: > > > > > Too few calories and the body will > > >start burining its own fat to make up and that will lower > ketosis. > > >, 's mom > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 I'll have a go - It's one of those isn't it - no straight answer of course... but here's how I see it and how it applied to ... Too few cals for too long meant that once caloric fat was used up some body fat was burnt to top up energy needs, but only to a certain point. His body wouldn't 'let' all available body fat be burnt. His body switched to using muscle tissue (as there was no glucose in the blood level to top needs up, being in ketosis an' all..), a process called catabolic gluceogenesis. The protein from muscle converts to glucose, raises the level in the blood, which in turn lowers ketones. At which point this process 'switches on' is an individual thing - some kids would be skin and bone before going catabolic - wasn't, scales showed no real change - but 'inside', his body composition was changing - increased fat distribution, decreased lean muscle mass = same weight but totally unhealthy with absolutely no hight increase, and getting weaker in the process, with low waking ketones and early am seizures. Once someone has been catabolic for a long period (and this is pretty rare, usually you will see some warning signs) metabolic derangement can occur - so even when you start to right things and give adequate cals, those cals are not neccessarily metabolised the way you think they are - like protein, carb and fat might still be absorbing/storing abnormally whilst the body recovers. So both too few cals and too many can cause low ketones - too many cals leaves too much glucose floating in the bloodstream to allow adequate ketosis to be maintained - blood glucose is preferentially used for energy, ie - gluceogenesis -but when this isn't available and caloric and body fat aren't available for energy either, 'catabolic gluceogenis' occurs - where the body isn't mimicing starvation, it is actually literally being starved. Glucose testing after fasting will help figure out whether either form or gluceogenesis is occurring - like after caloric fat from a meal is used up, if blood glucose levels go up and ketones go down before the next meal, this would say that glucose is being produced from somewhere rather than ketones being produced and burnt from body fat. It won't unfortunately tell you though where this glucose is coming from - is it from too much glucose in the blood from excess cals, (or ratio too low so too many carbs being stored) or is it from a catabolic process where muscle tissue is broken down. This has to be guaged mainly from growth charts - if height is ticking along, it is doubtful too few cals is the problem, as the body won't grow in height if there is not enough fuel being given. Survivial comes first, growth second. A dexa scan will then show if the the body compostion has changed, in 's case it def had. The endo was actually able to look at his growth charts and tell us roughly at which point his catabolic process probably kicked off. The biggest mistake we made was not increasing calories as he grew - which he did initially on the diet. Bigger body mass meant he had needed more fuel, we didn't pick up the signs. An added complication too that can occur with catabolism is that the body goes into stress, meaning stress hormones are released, all of which are glucose producing. Even when ketones are at an ok level, if high glucose levels co-exist, then the glucose will be used preferentially over the equally available ketones. So seizures as the body switches between the 2 metabolic processes can remain a mystery unless regular blood testing is done to see a pattern developing. Urine ketones will not give an accurate picture of where the blood ketone and glucose levels were at the time of the seizure. Clear as mud? Basically, if cals are set correctly and growth ticks along (usually at a slower rate on the diet, but shouldn't be total standstill) with no dramatic fluctuations in blood ketones or glucose, and no substantial weight gains or losses, then you can be pretty sure that no gluceogenesis process is occurring. Er, I think... ----- Original Message ----- From: mmc@... Jay wrote: > , > I thought even if the body burns its own fat it'll still increase > ketosis. > > Saro No............Barb M had this figured out pretty good and I can't remember exactly how it works, but I do (think) I know that if too few calories are being given and you increase calories you will get better ketosis. Lets ask since she is our resident expert on catabolic states > mmc@... wrote: > > > Too few calories and the body will > >start burining its own fat to make up and that will lower ketosis. > >, 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 You've touched a nerve here - lol - here I go..... I searched and searched for literature or previous case histories similar to 's as his dramas were unfolding, and drew a blank - (as did our endo, and he obviously has access to a much greater number of journal papers than me) but like you say, it probably has occurred more times than any of us credit, and it has not been studied/documented enough to have info at our Drs' fingertips to say oh oh - this looks like another case of such and such...how are we gonna rectify... But yes, one of the first questions I think that should be asked of anyone whose kiddie has had, and then lost control is just that though - has growth come to a standstill, and if so, what are glucose levels doing. Even if it is not the reason, or if it is, and a slow process sometimes to rectify, at least there would be a def avenue to proceed in, with more than just the standard 'oops, sorry, but keto must have just stopped working for your child, lets add this med and then that one...' that so many of us hear instead Trouble is, for every child that hasn't grown on the diet and has eventually lost seizure control, there is probably another one next in line whose growth also stopped but who has retained seizure control. So maybe it isn't set in concrete enough or constant enough to actually be documented?? Mind you, neither is anything with keto I spose, like the phenomenon of meds turning toxic during ketosis, for instance - some kiddies it happens to, others it doesn't. We weren't prepared when that scenario happened to 2 weeks post diet intiation either, it was only from reading and asking questions here that we knew to try reducing meds to gain his initial good control back. Which worked - but we may well have chucked in the towel in 2001 otherwise. As far as Hopkins goes, I remember when I did first starting reading emails here 3 yrs ago, (yikes, where have THOSE yrs gone..) no one under their care was ever advised to check glucose levels, (except if there was maybe a risk of hypoglycemia, opp to what we are talking about here) whereas the likes of Patti/Katera thru the Oregon clinic were told it was very important to monitor them, making sure they don't go too low OR too high, perhaps even more important to watch for than ketone fluctuations. When 's 2nd round of catabolism woes happened, I remember speaking to our neuro on the phone and I said I think we have a problem, 's glucose was above 5.0 on waking all this week, and he was like - 'And? Those ranges are all in the normal level..' But the fact is, for keto kids, nuh uh - nope, no they ain't, especially after fasting - they aren't supposed to have glucose magically appearing out of the blue... Even though it had already happened to not 6 mths earlier, I still had to set it all out in writing - like here's a copy cat situation of earlier this yr, growth has stopped, glucose on the rise, losing seizure control, etc etc...ting ting - warning warning..... And you know what - if it happened to another kiddie tomorrow at our hospital - loss of control seemingly appearing from nowhere - do I think ree dx and dexa scans and glucose tests would be ordered? Sadly - no, I don't.... That paper I posted here not long ago (where there was a discussion group involving some Hopkins keto team folk) touched on the possibility of using blood glucose levels as a guide for finetuning, no mention of using them to see if there was a catabolic process happening mind you, but it looks like the wheels might slowly be turning over there. The same paper also mentioned ree dx as a more accurate 'possibility' to set calories, whereas the likes of CHOP use it in all their study patients with a huge degree of success, have been for quite some time. Since it is used regulalry there btw, (as are dexa scans to monitor body composition changes) I doubt there would be many cases at all of insufficient cals or catabolism in the study group, cos so much of the guesswork is eliminated with the detailed testing they carry out. Thing is though, a study group means in other words - 'funds available' to go to those sorts of lengths.... So in some areas I think Hopkins has fallen a bit behind the 8 ball, but I guess no centre can have fingers on the pulse for every facet in what is obviously a hugely complicated treatment. Maybe a large part of the investigative funding there is dedicated more to the 'why the diet works in the first place' , which is of course equally important, question is - what gets investigated and documented in depth first - if we had billions of dollars to throw at them all, maybe all these questions would be answered sooner rather than later?? Meanwhile I guess we all keep on doing what we are on here, which is hopefully widening knowledge in our own little yahoo keto parent world and making sure all these possibilities are looked at whenever problems arise, and hope that eventually more than just the basic scenarios for loss of control, or even lack of attaining it in the first place are put on the table as possibilities. K - done now ----- Original Message ----- From: mmc@... Thanks Sue You know I really wonder.......for so many kids who initially do well on the diet and then it just mysteriously stops working after a year or more, is this whats happening for some of those kids? And at that point, as you say, even adding calories ain't gonna be a quick fix solution. So add calories, nope, that didn't work, decrease calories, no good, play with ratio, nope, sorry it just stopped working and all the finetuning in the world didn't help..... You really ought to write an article Sue.......but seriously, how aware is Hopkins of this issue? Hill wrote: > > > I'll have a go - It's one of those isn't it - no straight answer of > course... but here's how I see it and how it applied to ... > Too few cals for too long meant that once caloric fat was used up > some body fat was burnt to top up energy needs, but only to a certain > point. His body wouldn't 'let' all available body fat be burnt. His > body switched to using muscle tissue (as there was no glucose in the > blood level to top needs up, being in ketosis an' all..), a process > called catabolic gluceogenesis. The protein from muscle converts to > glucose, raises the level in the blood, which in turn lowers ketones. > At which point this process 'switches on' is an individual thing - > some kids would be skin and bone before going catabolic - > wasn't, scales showed no real change - but 'inside', his body > composition was changing - increased fat distribution, decreased lean > muscle mass = same weight but totally unhealthy with absolutely no > hight increase, and getting weaker in the process, with low waking > ketones and early am seizures. > Once someone has been catabolic for a long period (and this is > pretty rare, usually you will see some warning signs) metabolic > derangement can occur - so even when you start to right things and > give adequate cals, those cals are not neccessarily metabolised the > way you think they are - like protein, carb and fat might still be > absorbing/storing abnormally whilst the body recovers. > So both too few cals and too many can cause low ketones - too many > cals leaves too much glucose floating in the bloodstream to allow > adequate ketosis to be maintained - blood glucose is preferentially > used for energy, ie - gluceogenesis -but when this isn't available and > caloric and body fat aren't available for energy either, 'catabolic > gluceogenis' occurs - where the body isn't mimicing starvation, it is > actually literally being starved. > Glucose testing after fasting will help figure out whether either > form or gluceogenesis is occurring - like after caloric fat from a > meal is used up, if blood glucose levels go up and ketones go down > before the next meal, this would say that glucose is being produced > from somewhere rather than ketones being produced and burnt from body > fat. It won't unfortunately tell you though where this glucose is > coming from - is it from too much glucose in the blood from excess > cals, (or ratio too low so too many carbs being stored) or is it from > a catabolic process where muscle tissue is broken down. > This has to be guaged mainly from growth charts - if height is > ticking along, it is doubtful too few cals is the problem, as the body > won't grow in height if there is not enough fuel being given. > Survivial comes first, growth second. A dexa scan will then show if > the the body compostion has changed, in 's case it def had. The > endo was actually able to look at his growth charts and tell us > roughly at which point his catabolic process probably kicked off. > The biggest mistake we made was not increasing calories as he grew - > which he did initially on the diet. Bigger body mass meant he had > needed more fuel, we didn't pick up the signs. > An added complication too that can occur with catabolism is that the > body goes into stress, meaning stress hormones are released, all of > which are glucose producing. Even when ketones are at an ok level, if > high glucose levels co-exist, then the glucose will be used > preferentially over the equally available ketones. So seizures as the > body switches between the 2 metabolic processes can remain a mystery > unless regular blood testing is done to see a pattern developing. > Urine ketones will not give an accurate picture of where the blood > ketone and glucose levels were at the time of the seizure. > Clear as mud? > Basically, if cals are set correctly and growth ticks along (usually > at a slower rate on the diet, but shouldn't be total standstill) with > no dramatic fluctuations in blood ketones or glucose, and no > substantial weight gains or losses, then you can be pretty sure that > no gluceogenesis process is occurring. Er, I think... > > > > ----- Original Message ----- > From: mmc@... > > Jay wrote: > > > , > > I thought even if the body burns its own fat it'll still > increase > > ketosis. > > > > Saro > > No............Barb M had this figured out pretty good and I can't > remember exactly how it works, but I do (think) I know that if too > few > calories are being given and you increase calories you will get > better > ketosis. Lets ask since she is our resident expert on > catabolic > states > > > > mmc@... wrote: > > > > > Too few calories and the body will > > >start burining its own fat to make up and that will lower > ketosis. > > >, 's mom > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 You really do sound like you could do a PhD in this, and everything I'm reading is making me want to somehow get your knowledge and undersatnding to the medical teams. When you talk about your 'endo' is that an endocrinology doctor? I'm also interested in these scans....dexa and ree dx....I've not come across these despite being in the business so to speak. Also what is CHOP..is it a centre in NZ or USA where they are doing all this monitoring. Everything that you're writing is resonating with our experiences with Mia. We now have very high ketones again...perhaps too high still (Often off the scale on the blood monitor but better than a few days ago) despite going down to 3.5:1 3 days ago. Our cals are 1000 a day still but we're wondering if they will need adjusting...too early to tell with weight alone. However her glucose this morning was 4.7 with ketones of 5.2, before any food. She had definitely been in catabolic state about 2 weeks ago and I wonder if the situation is still a bit in freefall? We are planning to sit tight for a bit but maybe this isn't right?? She does seem to be slowly improving with much fewer seizures and trying to walk and talk again though a little way to go. My fear for Mia, and other children who have shown a repsonse and then got in a muddle for whatever reason, is that the potential problems in the fine tuning stage if understood could, in most cases, probably be overcome. Perhaps all the stats on the keto diet would then be even more impressive...i.e many of those that are currently in the 'diet didn't work' or 'only had a minimal response' categories were perhaps fine tuning probs that never got ironed out. Some children by good fortune or grace seem to hit it right with calories and ratio from the beginning but it's my intuition and hope that if you can just understand what's happening, if fine tuning goes a bit pear shaped, you'll get there. I feel we've made tons of mistakes so far and learned from them through support from parents in this discussion group and 's friends in the UK. We need to find some way of getting the professionals up to speed with the level of knowledge that parents have. Maybe I need to consider a career change! In the meantime if there are any further tips as to what we should be doing with Mia...even if it is just sitting tight for a while...let us know. Thanks Dominic > > > > > > > Too few calories and the body will > > > >start burining its own fat to make up and that will lower > > ketosis. > > > >, 's mom > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 , Thanks so much for your posts. I'll have to print them out and read carefully again to take in all the points you've raised. It scares me now, thinking about it. Rohan had good control only for a month with Depakote on board. After that we were weaning Dep over 10 months and then horrible sleep sz etc. Then a calorie decrease and seemingly better control for a couple of months. Then osteoporosis Halt in growth and once I was shocked to see him in underpants that were nearly falling off him. He did look like a prisoner of war from some old war movie. It did shock me! I can't remember whether this was before or after osteo was diagnosed. We did increase calories then. He might have been very near if not actually at the start of a catabolic state. Throughout all this we had no control of sz (still don't ) and he was on low ketones - around 1 in the AM and max 4 in the PM. No glucose readings were taken. We did request BHB and a glucose reading as he was getting sz at regular times after meals. By the time they got their equipment ready that time was well past! Rohan's dr. is one of the pioneers of KGD here. I do hope better testing will be done and become routine in all the centres. Saro Hill wrote: > You've touched a nerve here - lol - here I go..... > I searched and searched for literature or previous case histories similar to 's as his dramas were unfolding, and drew a blank - (as did our endo, and he obviously has access to a much greater number of journal papers than me) but like you say, it probably has occurred more times than any of us credit, and it has not been studied/documented enough to have info at our Drs' fingertips to say oh oh - this looks like another case of such and such...how are we gonna rectify... > But yes, one of the first questions I think that should be asked of anyone whose kiddie has had, and then lost control is just that though - has growth come to a standstill, and if so, what are glucose levels doing. Even if it is not the reason, or if it is, and a slow process sometimes to rectify, at least there would be a def avenue to proceed in, with more than just the standard 'oops, sorry, but keto must have just stopped working for your child, lets add this med and then that one...' that so many of us hear instead > > Trouble is, for every child that hasn't grown on the diet and has eventually lost seizure control, there is probably another one next in line whose growth also stopped but who has retained seizure control. So maybe it isn't set in concrete enough or constant enough to actually be documented?? > Mind you, neither is anything with keto I spose, like the phenomenon of meds turning toxic during ketosis, for instance - some kiddies it happens to, others it doesn't. We weren't prepared when that scenario happened to 2 weeks post diet intiation either, it was only from reading and asking questions here that we knew to try reducing meds to gain his initial good control back. Which worked - but we may well have chucked in the towel in 2001 otherwise. > As far as Hopkins goes, I remember when I did first starting reading emails here 3 yrs ago, (yikes, where have THOSE yrs gone..) no one under their care was ever advised to check glucose levels, (except if there was maybe a risk of hypoglycemia, opp to what we are talking about here) whereas the likes of Patti/Katera thru the Oregon clinic were told it was very important to monitor them, making sure they don't go too low OR too high, perhaps even more important to watch for than ketone fluctuations. > When 's 2nd round of catabolism woes happened, I remember speaking to our neuro on the phone and I said I think we have a problem, 's glucose was above 5.0 on waking all this week, and he was like - 'And? Those ranges are all in the normal level..' But the fact is, for keto kids, nuh uh - nope, no they ain't, especially after fasting - they aren't supposed to have glucose magically appearing out of the blue... > Even though it had already happened to not 6 mths earlier, I still had to set it all out in writing - like here's a copy cat situation of earlier this yr, growth has stopped, glucose on the rise, losing seizure control, etc etc...ting ting - warning warning..... > And you know what - if it happened to another kiddie tomorrow at our hospital - loss of control seemingly appearing from nowhere - do I think ree dx and dexa scans and glucose tests would be ordered? Sadly - no, I don't.... > That paper I posted here not long ago (where there was a discussion group involving some Hopkins keto team folk) touched on the possibility of using blood glucose levels as a guide for finetuning, no mention of using them to see if there was a catabolic process happening mind you, but it looks like the wheels might slowly be turning over there. > > The same paper also mentioned ree dx as a more accurate 'possibility' to set calories, whereas the likes of CHOP use it in all their study patients with a huge degree of success, have been for quite some time. Since it is used regulalry there btw, (as are dexa scans to monitor body composition changes) I doubt there would be many cases at all of insufficient cals or catabolism in the study group, cos so much of the guesswork is eliminated with the detailed testing they carry out. Thing is though, a study group means in other words - 'funds available' to go to those sorts of lengths.... So in some areas I think Hopkins has fallen a bit behind the 8 ball, but I guess no centre can have fingers on the pulse for every facet in what is obviously a hugely complicated treatment. Maybe a large part of the investigative funding there is dedicated more to the 'why the diet works in the first place' , which is of course equally important, question is - what gets investigated and documented in depth first - if we had billions of dollars to throw at them all, maybe all these questions would be answered sooner rather than later?? > Meanwhile I guess we all keep on doing what we are on here, which is hopefully widening knowledge in our own little yahoo keto parent world and making sure all these possibilities are looked at whenever problems arise, and hope that eventually more than just the basic scenarios for loss of control, or even lack of attaining it in the first place are put on the table as possibilities. > K - done now > > > > > ----- Original Message ----- > From: mmc@... > > Thanks Sue > You know I really wonder.......for so many kids who initially do well on > the diet and then it just mysteriously stops working after a year or > more, is this whats happening for some of those kids? And at that point, > as you say, even adding calories ain't gonna be a quick fix solution. So > add calories, nope, that didn't work, decrease calories, no good, play > with ratio, nope, sorry it just stopped working and all the finetuning > in the world didn't help..... > You really ought to write an article Sue.......but seriously, how aware > is Hopkins of this issue? > > > Hill wrote: > > > > > > > I'll have a go - It's one of those isn't it - no straight answer of > > course... but here's how I see it and how it applied to ... > > Too few cals for too long meant that once caloric fat was used up > > some body fat was burnt to top up energy needs, but only to a certain > > point. His body wouldn't 'let' all available body fat be burnt. His > > body switched to using muscle tissue (as there was no glucose in the > > blood level to top needs up, being in ketosis an' all..), a process > > called catabolic gluceogenesis. The protein from muscle converts to > > glucose, raises the level in the blood, which in turn lowers ketones. > > At which point this process 'switches on' is an individual thing - > > some kids would be skin and bone before going catabolic - > > wasn't, scales showed no real change - but 'inside', his body > > composition was changing - increased fat distribution, decreased lean > > muscle mass = same weight but totally unhealthy with absolutely no > > hight increase, and getting weaker in the process, with low waking > > ketones and early am seizures. > > Once someone has been catabolic for a long period (and this is > > pretty rare, usually you will see some warning signs) metabolic > > derangement can occur - so even when you start to right things and > > give adequate cals, those cals are not neccessarily metabolised the > > way you think they are - like protein, carb and fat might still be > > absorbing/storing abnormally whilst the body recovers. > > So both too few cals and too many can cause low ketones - too many > > cals leaves too much glucose floating in the bloodstream to allow > > adequate ketosis to be maintained - blood glucose is preferentially > > used for energy, ie - gluceogenesis -but when this isn't available and > > caloric and body fat aren't available for energy either, 'catabolic > > gluceogenis' occurs - where the body isn't mimicing starvation, it is > > actually literally being starved. > > Glucose testing after fasting will help figure out whether either > > form or gluceogenesis is occurring - like after caloric fat from a > > meal is used up, if blood glucose levels go up and ketones go down > > before the next meal, this would say that glucose is being produced > > from somewhere rather than ketones being produced and burnt from body > > fat. It won't unfortunately tell you though where this glucose is > > coming from - is it from too much glucose in the blood from excess > > cals, (or ratio too low so too many carbs being stored) or is it from > > a catabolic process where muscle tissue is broken down. > > This has to be guaged mainly from growth charts - if height is > > ticking along, it is doubtful too few cals is the problem, as the body > > won't grow in height if there is not enough fuel being given. > > Survivial comes first, growth second. A dexa scan will then show if > > the the body compostion has changed, in 's case it def had. The > > endo was actually able to look at his growth charts and tell us > > roughly at which point his catabolic process probably kicked off. > > The biggest mistake we made was not increasing calories as he grew - > > which he did initially on the diet. Bigger body mass meant he had > > needed more fuel, we didn't pick up the signs. > > An added complication too that can occur with catabolism is that the > > body goes into stress, meaning stress hormones are released, all of > > which are glucose producing. Even when ketones are at an ok level, if > > high glucose levels co-exist, then the glucose will be used > > preferentially over the equally available ketones. So seizures as the > > body switches between the 2 metabolic processes can remain a mystery > > unless regular blood testing is done to see a pattern developing. > > Urine ketones will not give an accurate picture of where the blood > > ketone and glucose levels were at the time of the seizure. > > Clear as mud? > > Basically, if cals are set correctly and growth ticks along (usually > > at a slower rate on the diet, but shouldn't be total standstill) with > > no dramatic fluctuations in blood ketones or glucose, and no > > substantial weight gains or losses, then you can be pretty sure that > > no gluceogenesis process is occurring. Er, I think... > > > > > > > > ----- Original Message ----- > > From: mmc@... > > > > Jay wrote: > > > > > , > > > I thought even if the body burns its own fat it'll still > > increase > > > ketosis. > > > > > > Saro > > > > No............Barb M had this figured out pretty good and I can't > > remember exactly how it works, but I do (think) I know that if too > > few > > calories are being given and you increase calories you will get > > better > > ketosis. Lets ask since she is our resident expert on > > catabolic > > states > > > > > > > mmc@... wrote: > > > > > > > Too few calories and the body will > > > >start burining its own fat to make up and that will lower > > ketosis. > > > >, 's mom > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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