Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hang in here Emma, thinking of you, the 4 meal idea has totally helped re angst at meal times so thank you so much, Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hang in here Emma, thinking of you, the 4 meal idea has totally helped re angst at meal times so thank you so much, Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hmm, well **** Emma, rollercoaster ride back eh? Ugh. I think you are right, that is a helluva rapid weight gain in 2 or so weeks, maybe you did overshoot the cal mark. The glucose result would be the same as when he was catabolic, gluceogenesis happening again, this time poss thru glycogen stored from excess cals rather than from breaking down muscle mass from cal deficiency and producing it that way instead. However.....with children and growth, disproportionate weight gain can precede height growth while you wait for them to 'grow' into that weight. Especially after a period of being catabolic. With keto kids this can obviously be a problem, he has had enough cals now obviously to get him back on track growth wise, but possibly just too many to be mimicing starvation as the diet is designed to do. His muscle mass may also be low from being catabolic, meaning his metabolism as a result possibly isn't yet running up to speed enough to chew through that calorie amount. THIS is precisely where that ree dx would be your saviour - the guesswork you are having to use for getting the cal level correct allows days with seizures to sneak back in whilst you tweak them around, and as we all know, once they get back into that cycle, it becomes even more of an uphill battle to get them back on track again Where has that weight increase put him on the growth charts? Probably too soon to gauge height increase, but worth checking that as well just in case he has increased in height? If it were me I probably would reduce cals a bit, what does your dietican think? Was the 50 cals with a week in between her suggestion? > Hope everybody is okay – sorry I've not been posting recently – been > on holiday (very wet!) and has now seemed to take another > step backwards and I could really use some advice. > > After the original catabolic problem whereby I increased his > calories, it seems that we are now back at that original state – his > blood readings are back to what they were when this was going on even > though his calories have been increased substantially. I am now > thinking that they may need to be reduced. Would appreciate your > thoughts. > > I weighed on the 9th August and he was 33.6kgs, I weighed him > again this morning and he was 35.3kgs – which is why I am thinking > that calories may need to be reduced, but on the other hand he had > not put on weight or grown much at all over the past year – so do I > just ride out this storm? > > When he was catabolic his ketone readings were 1.3 and glucose 4.8 > first thing in the morning (that was about 4 weeks ago) – I upped his > calories and things improved but now they are back to these kind of > readings and this morning it was glucose 4.7 and ketones 1.8. I also > did a reading at about midnight last night (he had had valium by that > time though) his readings were glucose 4.1 and ketones 2.7 which is > again too low on the ketone front but he had had 3 seizures by that > time as well. > > I have had to give him rectal valium (again – that is twice in a > week) last night and he is obviously groggy today. > > The only thing I can think of is that the calories now need reducing > bit by bit until we get him back on an even keel (which I thought we > had). He was on 1860 calories and we increased them by 400 (all done > with his dietician) I am planning to reduce them by 50 cals each time > until things improve – giving about a week inbetween each drop. > > He is slightly constipated at the moment as well (in the process of > getting some senna for that one!) He does seem to be drooling a hell > of a lot at the moment (possibly cutting the big back teeth) and he > is rubbing his right eye a lot and normally when he does this then it > is followed by seizures and him waking up with weakness on his left > side. My poor lad can't seem to be able to go to sleep without > having seizures now and it is normally about the time that he is > going from REM sleep to a deeper sleep – it is like he is having > difficulty doing the cross over bit. Once he starts he seems to have > t/c seizures every half hour. This makes him tired and that makes > him fit more – it is a bloody circle we are going in at the moment. > He was also very clammy last night and sweaty (which is a miracle in > itself because does not sweat or cry tears) – he had no > temperature so I don't think he is sickening for anything. > > This is so frustrating – he was doing brilliantly and we were even > reducing the ratio, then we had the catabolic problem and then I > seemed to have got that under control and he was getting better again > (still not as good as he was but better) and now we have gone right > back to square one again. > > Anybody got any thoughts/suggestions because I could really use them > right now. > > Take care. > > Emma - Mum to who is really having a hard time at the moment! Quote Link to comment Share on other sites More sharing options...
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