Guest guest Posted July 31, 2004 Report Share Posted July 31, 2004 That cal increase may have been too much at once Emma, if the seizures returning in a bad way have coincided with ketones dropping off, esp a few days after the increase - allowing glycogen to store from any excess...it is almost like his body got a good place cal wise, then it started to be overkill? Maybe you need to cut the cal total back a bit? It is a fine line juggling them back to the right cal total if after a catabolic process, one that we probably lucked out on more than anything, but - having that ree dx test available to help us also played a huge part. Are you sure there is not one available? Any other hospitals or centres nearby that use them? Not in keto specifically, I mean just in any of the hospitals fullstop. It would tell you almost immediately if you have overshot the mark or not, perhaps saving him another build up on meds that you are needing to tide him through until you figure his exact cal need out. If he was starting to go catabolic, his metabolism will have slowed down, and his body is probably not yet at the stage of recognising what he needs nutritionally, and how it relates to ketone production, if that makes sense? What were his ketones and glucose levels like when these blood gases were done? If ketone production had already started to slow down, it will have reduced acidity. I am no expert on the blood gases, I go a bit 'duh' when I get D's results but I think I know enough to see that they are quite different from 's, who is in and out of that compensatory acid/alkaline type cycle, so I don't think this is what is happening to . The base excess (B/E) is acidic though, normal range is -2 to +2, the lower down the negatives, the more acidic they are, so that is the only one that is looking acidic to me. Why though, when none of the other readings are very acidic, I am not too sure about... If yu can get those ketones back up again, I'm sure you might be able to save yourself from getting stuck back into another benzo cycle, but I know - easier said than done...... ----- Original Message ----- > Hi , > > I have no idea what his previous blood gas results were as this is > the first time that I have received them personally - other times the > doctor has just said that they were fine (as they have done this > time). See what you think. > > Capillary Sample Acid/Base 37'C > > pH 7.413 > pCO2 4.38 kPa > p02 11.09 kPa > HC03 -act 20.5 mmol/L > HC03 -std 21.9 mmol/L > ctC02 21.5 mmol/L > BE( -3.1 mmol/L > BE(ecf) -4.1 mmol/L > > Electrolytes: > > Na+ 143.0 mmol/L > Cl- 108 mmol/L > > > I have no idea what I am looking for to tell you the truth - if you > could throw some light on this then I would be grateful. > > I seem to have lost s ketones totally (registering 0.8!) I > gave him 10mg Clobazam last night as the night before he had 7 > seizures and was like a zombie most of yesterday - so much so that I > could hardly get him to eat or drink (which really helps matters). > He only had 2 seizures in the early hours of this morning but he is > still a bit spaced today although he is brightening up a bit now. He > has eaten more this morning. > > I decided to go right to the beginning yesterday, and have basically > put him back on a 4:1 ratio with the additional 400 calories for the > time being to try and get ketones up a bit. I have stopped the lower > ratio and ditched the MCT oil - I just really wish I could get him > back on an even keel again. This has been going on for 2 weeks now > and he is not up to going to his summer playscheme or anything. I > hate seeing him like this. > > It is a vicious circle we seem to be in - he seizes, gets tired, > doesn't want to eat, glucose rises, ketones drop and because he is > tired as well, he siezes more - it just keeps going round and I don't > know how to break this bloody cycle. I gave him Clobazam last night > and he did sleep better and only started having seizures at about > 5.30am, he had another at about 6.40am and I got him up after that > and although he is a bit spaced, he hasn't had a t/c since (he will > probably go nuts now that I have said that!) I am going to keep him > on the Clobazam for the next few nights to see if he can rest better > and try and break this cycle - I am just going to have to think of > the meds as being on antibiotics or something like that - I hate > having to give him AED's now he has been off them for so long - at > least Clobazam has only been prescribed short term. I will then wean > him off slowly. > > In the meantime, I have a serious case of cabin fever! > > Hope all is well with you and (what a cutie!) > > Take Care > Emma. - Mum to who is having a rough old time at the moment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 & Hill wrote: > I am no expert on the blood gases, I go a bit 'duh' when I get D's > results > but I think I know enough to see that they are quite different from > > 's, who is in and out of that compensatory acid/alkaline type > cycle, > so I don't think this is what is happening to . > The base excess (B/E) is acidic though, normal range is -2 to +2, > the > lower down the negatives, the more acidic they are, so that is the > only one > that is looking acidic to me. Why though, when none of the other > readings > are very acidic, I am not too sure about... Nope, in my opinion, even with that base excess number, I would say he's alkaline. Remember, base excess isn't something thats measured in the blood, its something they calculate based on the other numbers. But its not that low anyway. Drs have finally convinced me that bicarb is the most important number because PH will usually compensate itself. But now always, his hasn't. I would say he's alkaline, likely one of those famous swings. He was likely acidic, at least somewhat, when he had the ketones, with the ketones gone he likely swung the other way. I noticed when I was weaning Jess from the diet, I didn't follow blood gasses, but she had some wild urine ph swings, would get very alkaline, then back to acid one day, then alkaline, again, now " normal " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 Cheers , was hoping you would jump in there So perhaps some follow up gases to see if he is indeed swinging to and fro might be on the cards then. A shame there are no previous ones to compare to, but onwards I suppose. Normal urine ph for Jess now eh? Dare I ask how the seizure count is going? No, I won't actually, telepathically answer instead just in case ----- Original Message ----- > Nope, in my opinion, even with that base excess number, I would say he's > alkaline. Remember, base excess isn't something thats measured in the > blood, its something they calculate based on the other numbers. But its > not that low anyway. Drs have finally convinced me that bicarb is the > most important number because PH will usually compensate itself. But now > always, his hasn't. I would say he's alkaline, likely one of those > famous swings. He was likely acidic, at least somewhat, when he had the > ketones, with the ketones gone he likely swung the other way. > I noticed when I was weaning Jess from the diet, I didn't follow blood > gasses, but she had some wild urine ph swings, would get very alkaline, > then back to acid one day, then alkaline, again, now " normal " . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 & Hill wrote: > Normal urine ph for Jess now eh? Dare I ask how the seizure count is > going? No, I won't actually, telepathically answer instead just in > case LOL Well actually its not a " seizure month " (least I don't think it is, things got a little wacky last year) so we are fine. November would be the next one, I am hoping and praying that the carnosine and/or keppra will do the trick for us at the moment. Actually I think they are, I don't think the diet has been doing anything for the past 2 yrs, she had an awful year last year and hasn't been acidic at all this year. I do expect them to return, howerver, be it in Nov or in the next year. She has never made it up to 2 yrs seizure free before so..........I am sure you can identify with this but if I expect the worse, anything good I get is gravy. But if I hope......its devestating So for now, we enjoy Jess eating Quote Link to comment Share on other sites More sharing options...
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