Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Hi Emma, just had a quick read of earlier posts that came in over my night. I started to think things had turned, but read on, and I see from this one, it didn't last If ketones have dipped like that after a day of not eating, it might mean that he has now switched to tissue burning mode agian (ie - glucose inducing) now rather than fat? Looks like he got to a good place after not eating for a 'certain period' (ketones 4.3, glucose 3.8 at 5 pm), then started tipping the other way? Is this what you are thinking too? With his recent weight gain you would think he would carry on trucking thru strored fat to keep him going when he hasn't eaten, but if his metabolism is still out of whack he may not be following all the rules..... The weight gain he had - although probably too rapid keto/seizure control wise, was it actually 'needed' body wise, like has it made him appear overweight, or is he looking around about right body wise now? What I'm trying to get at, (sorry, I'm getting there is - does he look like he has adequate fat on his frame to burn for fuel in the absence of calories? If he does look like there is enough there (which certainly did have but the fat just 'wouldn't shift') and this isn't happening, then it is basically saying I guess that he is not following the process of ketosis on the diet to a T. No surprise to you I'm sure....but at least it is probably showing you that there is still a diet/metabolism cause for what is going on with him right now, not just 'one of those unexplainable things'. Prob little comfort right now, but it used to make me feel a bit better about it all...meaning once you can get on top of it, there's no reason you can't him back on track seizure wise. Anyways...Freeman's book says that after a 24 hr fast, 'if ketones rise, we will reduce calories'. Doesn't go into why, and why the opposite happens in that part of the book - but if they do keep rising it is probably because there is still adequate fat to keep burning, meaning the child is likely to be overweight......if they don't keep on rising throughout that 24 hrs, then I am assuming it is because there isn't enough surplus body fat to sustain them for that long, so not overweight, and muscle/tissue breakdown is therefore used for fuel instead. If glucose had gone up high from the beginning of the fast, then slowly gone down - then this would prob be depleting glycogen stores on board from excess cals, like say when a kiddie first starts the diet, and then the ketones start to appear, and away they go... None of this relates though to the possibility of the body being in a state of metabolic derangement after a period of prior catabolism...where all the rules change both in metabolism/absorption of calories, and also the conversion of body fat back to either lean muscle mass or to ketone bodies. I am desperately trying to remember what our endocrinoligist said about this process of 'rebuilding', and not getting very far, and his actual keto-diet knowledge was very limited, so it was a matter of him and our dietician pooling resources to come up with what needed (in conjunction with the ree dx result). The reason it gets even more complicated, and therefore possibly requiring an endo's input, is that the rise in glucose and ketone plummet down around 11 pm may also be from some growth hormone being produced overnight. He hasn't grown for ages, he got a recent period of enough calories to start again, and his growth hormone is probably jumping up and saying 'me first'. Upshot - I'm not really sure what your next move should be He had a good day after not eating - probably depleted excess glycogen stores from previous excess cals, got him back on track for a while. Then he seems to have switched back to catabolic mode at the end of the day (they can tip easily back in and out for quite some time as you know), so would a keto meal at the end of the day before sleep helped prevent the dip again? I'm not sure, and how on earth we are supposed to guage when and if this is how to juggle him back out, I'm not sure about either. I wouldn't let the seizures get to the rate they were the other night of one per hr, this may be a night where you have to cover what has now happened glucose wise with the valium (hoping of course the stuff actually does it's job...) and hope that from tomorrow you can put him back to regular keto meals with no fasting and see some stability ketone/glucose wise. I would give my right arm to know what his metabolic calorie requirement is showing right now, as would you, I know you would be feeling a lot more cofident about what sort of calorie total to give him tomorrow Perhaps very very regular blood readings throughout the day can be your guide - like as soon as you see glucose start to increase a bit during the day close to when his next meal would be due - get a keto meal into him, wait till it peaks then starts to fall and when the ketones start to lower and glucose increase again - give him another one, and so on... A crude method of trying to suss out what he actually 'needs' keto wise while he is going though this, but it may be enough to stop any catabolic process switching on during the night? ----- Original Message ----- From: ketomum68 had another seizure at 9.15pm and I gave the rectal valium, unfortunately he then had another seizure at 11.05 not even 2 hours after the valium was given - I may have to give it at 4 hourly intervals - I just need to see how regularly the seizures are going to come this evening. I have done another test at 11.15 (I know it was long after the seizure he had but I wanted to see what was happening) the readings were Ketones 1.3 and Glucose 4.9 - so in the space of a couple of hours the ketones have plummeted and the glucose has gone up substantially. I have a feeling it is going to be another long night. Anybody throw any light on this? Emma - Mum to who is have a really crappy time at the moment. 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Guest guest Posted August 27, 2004 Report Share Posted August 27, 2004 Just finished keto meals and packing for tomorrow. Wish I had some answers for you. Lots of love Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Emma, The diet isn't right. Ratio is too high or too low, calories are too high or too low. Meals need to be spaced out, snacks added in. Everything needs to be checked for mistakes in calculations or in preparation of the meals. Maybe fats need to be changed. Dr. Freeman's book has these and other suggestions to fine tune the diet. Good luck, Bill ketomum68 wrote: > had another seizure at 9.15pm and I gave the rectal valium, > unfortunately he then had another seizure at 11.05 not even 2 hours > after the valium was given - I may have to give it at 4 hourly > intervals - I just need to see how regularly the seizures are going > to come this evening. > > I have done another test at 11.15 (I know it was long after the > seizure he had but I wanted to see what was happening) the readings > were Ketones 1.3 and Glucose 4.9 - so in the space of a couple of > hours the ketones have plummeted and the glucose has gone up > substantially. I have a feeling it is going to be another long night. > > Anybody throw any light on this? > > Emma - Mum to who is have a really crappy time at the moment. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Emma, do you have a script for ativan, it may help when the diastat doesn't anymore, sounds like his threshold is too high. amanda -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
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