Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Hi Emma, Sounding good so far, liking these sorts of updates... Re the ph, some kiddies seem to need to be kept in an acidic state to maintain seizure control, others not, but as ketones are acid inducing, more often than not the acid state is the most common one to be in - unless there is anything compensatory going on, in which case there can be fluctuations to and fro acid and alkaline, like does. Re the carnitine, a deficiency on the diet is more likely when short or long chain fats are mainly used rather than medium chain like MCT oil - as far as I know MCT does not need carnitine to aid in fat transportation in the mitochondria like the other two do. Don't quote me on that, I may have it a bit screwy, but something like that anyway..... Def worth checking levels though, to cross all the t's and dot the i's. Plodding on down here - had his ree dx test yesterday, bit of a suprise to see he may in fact now be on too many cals based on his metabolic resting rate, but waiting for my dietician to add her bits and pieces on percentage wise and get back to me with her recommendation. His depakote (epilim) dose was peaking at the time the test was being done, so that may have skewed results a tad, as it does tend to slow things down in him at that time of day. Measured him while we were there, and he has grown another 6 mm in the past 4 weeks, so at this point I think we'll keep on the same level regardless. Makes a total of a cm growth in the last 2 mths, which although not nearly enough to start pulling him back up the height percentiles, it is a step in the right direction and means he is not at risk of going catabolic again anytime soon. Kidney ultrasound was all clear, everything looked good there, no stones forming or anything, so touch wood that seems to be another potential topomax/diet side effect might be escaping Hope all carries on smoothly over there, will look out for updates.... ----- Original Message ----- > Hi All, > > Things been very hectic around here the past few days - had to have a > new shower put in which resulted in a whole new fuseboard having to > be done because the old one was dangerous (oh goody) - Monday I was > without electricity and yesterday I was clearing up the house after > the aftermath of workmen - it looked like the battle of Waterloo had > taken place around here!!! I have been catching up with messages etc > this morning! > > Blood Gases: > > Thanks for the information on that and thanks for the papers you > posted - I am going to read those more indepth later on (when I > get a minute!) As far as all the information on the blood gases are > concerned, I wish I understood more of them!!!! Does need to > be acidic? > > Last week I started doing some research on Carnitine (after reading > posts etc on here about it I thought I had better look into what it > was all about) - Well, I SUSPECT that may not have been > getting too much because since I had introduced a lot more MCT oil, > his dairy and red meat had been cut drastically (I had started to > give him a lot more chicken and fish) - which are the 2 main sources > of carnitine. His carnitine levels have not been checked for MONTHS - > am trying to arrange to get this sorted out now. > > is now back on a classical 4:1 ratio where I have gone back > to the butter/cream etc and he is having a lot more red meat. I > have put his calories up by 310 (reduced from the initial increase of > 400) for the time being and will see how he goes with it for a while > and am weighing him every few days now - hopefully this will sort out > the catabolic problems. I am almost afraid to say this but > has been seizure free for the past 3 days and is back to his old self > (if that has just put the kiss of death on things then I am NEVER > going to post anything remotely positive again!!!!!) > > I also discovered YESTERDAY that MCT has less calories in it than > LCT - so whilst I was introducing more MCT oil he was losing calories > and I had no idea. I worked things out and discovered that he was > losing approximately 35 calories per meal - 105 in a day!!!! No > wonder he went catabolic. > > His ketones are back up now and the glucose levels are down and I am > now back to testing him twice a day. He has been to his playscheme > this week as well - so I just hope that we are sorted now (until the > next problem arises!!!!) > > Thank you so much for all your help - if it wasn't for and you > guys supporting me and giving me things to look into may well > still have been in that awful state he was. He was like he used to > be pre-diet and I really don't want us to go back there again - I had > forgotten how bad things were and how difficult it was living like > that. So then next time I get ticked off with having to weigh > everything I am just going to think of the past few weeks and > remember how much worse things used to be pre diet. > > I really appreciate the help and support. Thanks guys. > > Wishing you all the very best. > > Emma - Mum to - who is being as bigger flirt as ever and > kissing all the girls at his playscheme!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 Sounds good , a lot of bases to cover but don't it feel good when they all look clear. Think could give Jess any lessons on how to grow?? LOL Moe & Hill wrote: > Hi Emma, > Sounding good so far, liking these sorts of updates... > Re the ph, some kiddies seem to need to be kept in an acidic state to > maintain seizure control, others not, but as ketones are acid > inducing, more > often than not the acid state is the most common one to be in - unless > there > is anything compensatory going on, in which case there can be > fluctuations > to and fro acid and alkaline, like does. > Re the carnitine, a deficiency on the diet is more likely when short > or long > chain fats are mainly used rather than medium chain like MCT oil - as > far as > I know MCT does not need carnitine to aid in fat transportation in the > > mitochondria like the other two do. Don't quote me on that, I may have > it a > bit screwy, but something like that anyway..... > Def worth checking levels though, to cross all the t's and dot the > i's. > > Plodding on down here - had his ree dx test yesterday, bit of a > > suprise to see he may in fact now be on too many cals based on his > metabolic > resting rate, but waiting for my dietician to add her bits and pieces > on > percentage wise and get back to me with her recommendation. His > depakote > (epilim) dose was peaking at the time the test was being done, so that > may > have skewed results a tad, as it does tend to slow things down in him > at > that time of day. > Measured him while we were there, and he has grown another 6 mm in the > past > 4 weeks, so at this point I think we'll keep on the same level > regardless. > Makes a total of a cm growth in the last 2 mths, which although not > nearly > enough to start pulling him back up the height percentiles, it is a > step in > the right direction and means he is not at risk of going catabolic > again > anytime soon. > Kidney ultrasound was all clear, everything looked good there, no > stones > forming or anything, so touch wood that seems to be another potential > topomax/diet side effect might be escaping > Hope all carries on smoothly over there, will look out for updates.... > > > > ----- Original Message ----- > > > > Hi All, > > > > Things been very hectic around here the past few days - had to have > a > > new shower put in which resulted in a whole new fuseboard having to > > be done because the old one was dangerous (oh goody) - Monday I was > > without electricity and yesterday I was clearing up the house after > > the aftermath of workmen - it looked like the battle of Waterloo had > > > taken place around here!!! I have been catching up with messages > etc > > this morning! > > > > Blood Gases: > > > > Thanks for the information on that and thanks for the papers you > > posted - I am going to read those more indepth later on (when > I > > get a minute!) As far as all the information on the blood gases are > > > concerned, I wish I understood more of them!!!! Does need to > > > be acidic? > > > > Last week I started doing some research on Carnitine (after reading > > posts etc on here about it I thought I had better look into what it > > was all about) - Well, I SUSPECT that may not have been > > getting too much because since I had introduced a lot more MCT oil, > > his dairy and red meat had been cut drastically (I had started to > > give him a lot more chicken and fish) - which are the 2 main sources > > > of carnitine. His carnitine levels have not been checked for MONTHS > - > > am trying to arrange to get this sorted out now. > > > > is now back on a classical 4:1 ratio where I have gone back > > to the butter/cream etc and he is having a lot more red meat. I > > have put his calories up by 310 (reduced from the initial increase > of > > 400) for the time being and will see how he goes with it for a while > > > and am weighing him every few days now - hopefully this will sort > out > > the catabolic problems. I am almost afraid to say this but > > has been seizure free for the past 3 days and is back to his old > self > > (if that has just put the kiss of death on things then I am NEVER > > going to post anything remotely positive again!!!!!) > > > > I also discovered YESTERDAY that MCT has less calories in it than > > LCT - so whilst I was introducing more MCT oil he was losing > calories > > and I had no idea. I worked things out and discovered that he was > > losing approximately 35 calories per meal - 105 in a day!!!! No > > wonder he went catabolic. > > > > His ketones are back up now and the glucose levels are down and I am > > > now back to testing him twice a day. He has been to his playscheme > > this week as well - so I just hope that we are sorted now (until the > > > next problem arises!!!!) > > > > Thank you so much for all your help - if it wasn't for and you > > > guys supporting me and giving me things to look into may > well > > still have been in that awful state he was. He was like he used to > > be pre-diet and I really don't want us to go back there again - I > had > > forgotten how bad things were and how difficult it was living like > > that. So then next time I get ticked off with having to weigh > > everything I am just going to think of the past few weeks and > > remember how much worse things used to be pre diet. > > > > I really appreciate the help and support. Thanks guys. > > > > Wishing you all the very best. > > > > Emma - Mum to - who is being as bigger flirt as ever and > > kissing all the girls at his playscheme!!!! > > > > > > " 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...
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