Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi gang- Well... got some bloodwork back today - cholesterol came back way low again which sends up red flags. His numbers were mostly in the 20's. Ped. and diatician are leaning toward a fatty oxidation disorder. My dietician has recommended cutting the ratio from 3.5:1 to 2.5:1 to see how does. She said that only one time has she seen regression on the diet and this child had the same symptoms - lethargy that didn't go away, uncoordination, no smiles, regression in speech, and cognitive delays. Apparently they stuck to the diet for 3 months but they could never stabilize ketones and the side affects continued. Once they discontinued the diet - symptoms went away. The dietician didn't know what happened as far as seizure control as the family left the clinic. She also said that if is not digesting fat properly, I should see a difference as we wean. They are scheduling an apt. w/an endocrinologist for some time after the new year to test for a fatty oxidation disorder. So she has suggested going from 3.5:1 to 2.5:1 - do you think this is OK? Should I go ahead and do it before we leave for a 2 wk. vacation or wait til we get back? If he had a fatty oxidation disorder does that mean the diet isn't working at all? Might he even do better seizure wise w/a lower ratio or should I just stay put until after we get back from travelling? I'm so torn w/what to do. I don't care either way but I just want to help him. I haven't even had time to look up fatty oxidation disorders - I imagine since it's a metabolic disorder it's not going to be good. UGHhhh..... Thanks in advance for your suggestions/advice! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Woops - posts crossed, I didn't see this before I sent my other one just now. Wouldn't a possible fatty oxidation disorder be better diagnosed by a metabolic specialist instead of endo? Perhaps the 2 specialities cross in this one? Not sure, but I do remember it was our metabolic specilaist who had info on this when we asked about it soon after D's seizures first started. From what I remember, keto (at any ratio) is def not recommended with these types of disorders, neither are any periods of fasting. So prob the sooner you find out - the better? I will have a look at what I had saved to do with this, prob not a lot, but what I do have, I will send thru to your addy. And no, not all fatty oxidation disorders are nasties I don't think, even though they do seem to come under the inborn errors of metabolism umbrella - a lot of which can be. Will go and have a look now at what I have got here to do with this one, ----- Original Message ----- From: michelle paulson Hi gang- Well... got some bloodwork back today - cholesterol came back way low again which sends up red flags. His numbers were mostly in the 20's. Ped. and diatician are leaning toward a fatty oxidation disorder. My dietician has recommended cutting the ratio from 3.5:1 to 2.5:1 to see how does. She said that only one time has she seen regression on the diet and this child had the same symptoms - lethargy that didn't go away, uncoordination, no smiles, regression in speech, and cognitive delays. Apparently they stuck to the diet for 3 months but they could never stabilize ketones and the side affects continued. Once they discontinued the diet - symptoms went away. The dietician didn't know what happened as far as seizure control as the family left the clinic. She also said that if is not digesting fat properly, I should see a difference as we wean. They are scheduling an apt. w/an endocrinologist for some time after the new year to test for a fatty oxidation disorder. So she has suggested going from 3.5:1 to 2.5:1 - do you think this is OK? Should I go ahead and do it before we leave for a 2 wk. vacation or wait til we get back? If he had a fatty oxidation disorder does that mean the diet isn't working at all? Might he even do better seizure wise w/a lower ratio or should I just stay put until after we get back from travelling? I'm so torn w/what to do. I don't care either way but I just want to help him. I haven't even had time to look up fatty oxidation disorders - I imagine since it's a metabolic disorder it's not going to be good. UGHhhh..... Thanks in advance for your suggestions/advice! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 I think it is under metabolic disorders...I would get a full metabolic screening. Most likely the diet would be an issue in that case. Barb Re: fatty oxidation disorder? > > Woops - posts crossed, I didn't see this before I sent my other one just now. > Wouldn't a possible fatty oxidation disorder be better diagnosed by a metabolic specialist instead of endo? Perhaps the 2 specialities cross in this one? Not sure, but I do remember it was our metabolic specilaist who had info on this when we asked about it soon after D's seizures first started. > From what I remember, keto (at any ratio) is def not recommended with these types of disorders, neither are any periods of fasting. So prob the sooner you find out - the better? > I will have a look at what I had saved to do with this, prob not a lot, but what I do have, I will send thru to your addy. > And no, not all fatty oxidation disorders are nasties I don't think, even though they do seem to come under the inborn errors of metabolism umbrella - a lot of which can be. > Will go and have a look now at what I have got here to do with this one, > > > ----- Original Message ----- > From: michelle paulson > > Hi gang- > Well... got some bloodwork back today - cholesterol > came back way low again which sends up red flags. His > numbers were mostly in the 20's. Ped. and diatician > are leaning toward a fatty oxidation disorder. My > dietician has recommended cutting the ratio from 3.5:1 > to 2.5:1 to see how does. She said that only > one time has she seen regression on the diet and this > child had the same symptoms - lethargy that didn't go > away, uncoordination, no smiles, regression in speech, > and cognitive delays. Apparently they stuck to the > diet for 3 months but they could never stabilize > ketones and the side affects continued. Once they > discontinued the diet - symptoms went away. The > dietician didn't know what happened as far as seizure > control as the family left the clinic. She also said > that if is not digesting fat properly, I should > see a difference as we wean. > > They are scheduling an apt. w/an endocrinologist for > some time after the new year to test for a fatty > oxidation disorder. > > So she has suggested going from 3.5:1 to 2.5:1 - do > you think this is OK? Should I go ahead and do it > before we leave for a 2 wk. vacation or wait til we > get back? If he had a fatty oxidation disorder does > that mean the diet isn't working at all? Might he > even do better seizure wise w/a lower ratio or should > I just stay put until after we get back from > travelling? I'm so torn w/what to do. I don't care > either way but I just want to help him. I haven't > even had time to look up fatty oxidation disorders - I > imagine since it's a metabolic disorder it's not going > to be good. UGHhhh..... > > Thanks in advance for your suggestions/advice! > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 With any suspicion of a FOD, I think I would go ahead and lower his ratio sooner rather than later , even if it based on suspicion only at this stage. I really think your Dr has been quite negligent in saying refer in the New Year sometime if he really does suspect something like this while is still on keto. I think the full carn profile is v important, it is obviously an important diagnostic tool with a lot of these disorders, and the fact they didn't order it themselves without your requesting is a bit of a worry from where I sit. I think I would contact the Dr again asking if he could in fact be in metabolic crisis right now, better safe than sorry - esp if you are going away. And like Barb said - this is a metabolic field, and it sounds like he needs a metabolic panel done, incl urine organic acids etc. ----- Original Message ----- From: michelle paulson Yes you are right - keto is probably the worst diet to be on IF Coop has a fatty oxidation disorder. Just looked up some stuff briefly and from what I gather - following illness when people don't eat - they can go into metabolic crisis which requires a glucose IV. First sign is lethargy. Apparently, you should have frequent small snacks of lowfat/high carb. foods (YIKES) every 3-4 hours and should never go 10-12 hours w/out food. 2 things bother me - this is the 6th day he's slept ALL DAY (although he has eaten 3 complete meals today)I had to wake him up to eat, but he ate and went back to sleep. I don't know what to think about this lethargy. I mean is it the chicken or the egg? He hasn't eaten for 6 days, of course he's going to be lethargic. But, IF it is a fatty oxidation issue, might he be in metabolic crisis? Another thing that's strange to me is that he has been diagnosed w/Raynaud's syndrome (blue hands/feet in times of illness or stress). Well, recently, he's had more blue days than pink. I find this odd. Today, his lips and cheeks were also bluish. and cold, cold, cold. And... his last two glucose checks have been 50 and 51. Low for . The lowest reading I've ever recorded has been 54. Usually numbers in the 60's. BUT... is this because he hasn't been eating??? I just don't know what to do. We leave on Saturday for two wks. A BIG part of me wants to lower his ratio to see how he does, but my gut is telling me to slow down and to wait to lower until we get back. I just want to do what is safe and if he has a fatty oxidation disorder, obviously, lowering would be to his benefit. What would you do? Thanks!! You know, I don't want to jump the gun at all - who knows what's up. So to make matters worst, when my husband got to the lab this morning - there was NO carnitine order. Yesterday, (prior to your post) I told the Dr. I got a carnitine number so we didn't need to test again (I figured insurance wouldn't pay for it twice) but he said the order had already been sent to the lab. So... figured I'd just pay for it. No big deal. But, he must have called down to the lab after I left to remove it. So, long story short, didn't have the free and total carnitine done today. I'll just have to call him back tomorrow. I think it's pretty important. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 My advice would be to wait til after your trip. If it was me I wouldn't want to deal with the chance (however remote) of all he** breaking loose while away. And it doesn't seem a two week wait is going to hurt him any. Enjoy your trip, deal with it when you get back And when I said enjoy your trip, I meant ENJOY it!!! michelle paulson wrote: > Hi gang- > Well... got some bloodwork back today - cholesterol > came back way low again which sends up red flags. His > numbers were mostly in the 20's. Ped. and diatician > are leaning toward a fatty oxidation disorder. My > dietician has recommended cutting the ratio from 3.5:1 > to 2.5:1 to see how does. She said that only > one time has she seen regression on the diet and this > child had the same symptoms - lethargy that didn't go > away, uncoordination, no smiles, regression in speech, > and cognitive delays. Apparently they stuck to the > diet for 3 months but they could never stabilize > ketones and the side affects continued. Once they > discontinued the diet - symptoms went away. The > dietician didn't know what happened as far as seizure > control as the family left the clinic. She also said > that if is not digesting fat properly, I should > see a difference as we wean. > > They are scheduling an apt. w/an endocrinologist for > some time after the new year to test for a fatty > oxidation disorder. > > So she has suggested going from 3.5:1 to 2.5:1 - do > you think this is OK? Should I go ahead and do it > before we leave for a 2 wk. vacation or wait til we > get back? If he had a fatty oxidation disorder does > that mean the diet isn't working at all? Might he > even do better seizure wise w/a lower ratio or should > I just stay put until after we get back from > travelling? I'm so torn w/what to do. I don't care > either way but I just want to help him. I haven't > even had time to look up fatty oxidation disorders - I > imagine since it's a metabolic disorder it's not going > to be good. UGHhhh..... > > Thanks in advance for your suggestions/advice! > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 It sounds like something is seriously wrong and changes are needed sooner rather than later. Those symptoms along with low cholesterol are not normal on the diet. I would suggest going to 2.5:1 as suggested and look for improvements. You are at least getting some information about where to look for revisions to the diet. Bill michelle paulson wrote: > Hi gang- > Well... got some bloodwork back today - cholesterol > came back way low again which sends up red flags. His > numbers were mostly in the 20's. Ped. and diatician > are leaning toward a fatty oxidation disorder. My > dietician has recommended cutting the ratio from 3.5:1 > to 2.5:1 to see how does. She said that only > one time has she seen regression on the diet and this > child had the same symptoms - lethargy that didn't go > away, uncoordination, no smiles, regression in speech, > and cognitive delays. Apparently they stuck to the > diet for 3 months but they could never stabilize > ketones and the side affects continued. Once they > discontinued the diet - symptoms went away. The > dietician didn't know what happened as far as seizure > control as the family left the clinic. She also said > that if is not digesting fat properly, I should > see a difference as we wean. > > They are scheduling an apt. w/an endocrinologist for > some time after the new year to test for a fatty > oxidation disorder. > > So she has suggested going from 3.5:1 to 2.5:1 - do > you think this is OK? Should I go ahead and do it > before we leave for a 2 wk. vacation or wait til we > get back? If he had a fatty oxidation disorder does > that mean the diet isn't working at all? Might he > even do better seizure wise w/a lower ratio or should > I just stay put until after we get back from > travelling? I'm so torn w/what to do. I don't care > either way but I just want to help him. I haven't > even had time to look up fatty oxidation disorders - I > imagine since it's a metabolic disorder it's not going > to be good. UGHhhh..... > > Thanks in advance for your suggestions/advice! > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Thanks, - Don't know what to do - my husband is siding w/you - he doesn't want to risk increased seizures due to a change in ratio this close to leaving. I'm leaning toward lowering it thinking if he does have an FOD, this diet is NOT GOOD and maybe lowering the ratio would be beneficial. BUT... what if he doesn't have it, we're screwed. I'm just so worried b/c up until today at noon, he wasn't eating for the past 5 days. He's been soooo lethargic he can't even sit up by himself and he sleeps his days away (even today he slept all day - but he did eat 3 complete meals w/supplements as I woke him to eat). So... is he in metabolic crisis due to an FOD OR... did he just have some virus that he's getting over and is now feeling better since he's eating. He actually was walking thru the house after dinner. Haven't seen him do that in 6 days. UGHhhh... I'm torn. --- mmc@... wrote: > My advice would be to wait til after your trip. If > it was me I wouldn't > want to deal with the chance (however remote) of all > he** breaking loose > while away. And it doesn't seem a two week wait is > going to hurt him > any. Enjoy your trip, deal with it when you get back > And when I said enjoy your trip, I meant ENJOY > it!!! > > > michelle paulson wrote: > > > Hi gang- > > Well... got some bloodwork back today - > cholesterol > > came back way low again which sends up red flags. > His > > numbers were mostly in the 20's. Ped. and > diatician > > are leaning toward a fatty oxidation disorder. My > > dietician has recommended cutting the ratio from > 3.5:1 > > to 2.5:1 to see how does. She said that > only > > one time has she seen regression on the diet and > this > > child had the same symptoms - lethargy that didn't > go > > away, uncoordination, no smiles, regression in > speech, > > and cognitive delays. Apparently they stuck to > the > > diet for 3 months but they could never stabilize > > ketones and the side affects continued. Once they > > discontinued the diet - symptoms went away. The > > dietician didn't know what happened as far as > seizure > > control as the family left the clinic. She also > said > > that if is not digesting fat properly, I > should > > see a difference as we wean. > > > > They are scheduling an apt. w/an endocrinologist > for > > some time after the new year to test for a fatty > > oxidation disorder. > > > > So she has suggested going from 3.5:1 to 2.5:1 - > do > > you think this is OK? Should I go ahead and do it > > before we leave for a 2 wk. vacation or wait til > we > > get back? If he had a fatty oxidation disorder > does > > that mean the diet isn't working at all? Might he > > even do better seizure wise w/a lower ratio or > should > > I just stay put until after we get back from > > travelling? I'm so torn w/what to do. I don't > care > > either way but I just want to help him. I haven't > > even had time to look up fatty oxidation disorders > - I > > imagine since it's a metabolic disorder it's not > going > > to be good. UGHhhh..... > > > > Thanks in advance for your suggestions/advice! > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 When I wrote I didn't realize he was quite that bad. What I was thinking was that he's been on the diet for a fair bit of time and has been relatively okay. So this extreme lethargy, is that new? One more idea, split the difference, and lower the ratio to 3:1 before your trip? Life really sucks sometimes, I know. You know the saying " Let go and let God " . Perhaps you could try to find an answer there. Not sure that its divine intervention or that it just opens up your mind to think clearer? michelle paulson wrote: > Thanks, - > Don't know what to do - my husband is siding w/you - > he doesn't want to risk increased seizures due to a > change in ratio this close to leaving. > > I'm leaning toward lowering it thinking if he does > have an FOD, this diet is NOT GOOD and maybe lowering > the ratio would be beneficial. BUT... what if he > doesn't have it, we're screwed. I'm just so worried > b/c up until today at noon, he wasn't eating for the > past 5 days. He's been soooo lethargic he can't even > sit up by himself and he sleeps his days away (even > today he slept all day - but he did eat 3 complete > meals w/supplements as I woke him to eat). So... is > he in metabolic crisis due to an FOD OR... did he just > have some virus that he's getting over and is now > feeling better since he's eating. He actually was > walking thru the house after dinner. Haven't seen him > do that in 6 days. > > UGHhhh... I'm torn. > > --- mmc@... wrote: > > > My advice would be to wait til after your trip. If > > it was me I wouldn't > > want to deal with the chance (however remote) of all > > he** breaking loose > > while away. And it doesn't seem a two week wait is > > going to hurt him > > any. Enjoy your trip, deal with it when you get back > > And when I said enjoy your trip, I meant ENJOY > > it!!! > > > > > > michelle paulson wrote: > > > > > Hi gang- > > > Well... got some bloodwork back today - > > cholesterol > > > came back way low again which sends up red flags. > > His > > > numbers were mostly in the 20's. Ped. and > > diatician > > > are leaning toward a fatty oxidation disorder. My > > > dietician has recommended cutting the ratio from > > 3.5:1 > > > to 2.5:1 to see how does. She said that > > only > > > one time has she seen regression on the diet and > > this > > > child had the same symptoms - lethargy that didn't > > go > > > away, uncoordination, no smiles, regression in > > speech, > > > and cognitive delays. Apparently they stuck to > > the > > > diet for 3 months but they could never stabilize > > > ketones and the side affects continued. Once they > > > discontinued the diet - symptoms went away. The > > > dietician didn't know what happened as far as > > seizure > > > control as the family left the clinic. She also > > said > > > that if is not digesting fat properly, I > > should > > > see a difference as we wean. > > > > > > They are scheduling an apt. w/an endocrinologist > > for > > > some time after the new year to test for a fatty > > > oxidation disorder. > > > > > > So she has suggested going from 3.5:1 to 2.5:1 - > > do > > > you think this is OK? Should I go ahead and do it > > > before we leave for a 2 wk. vacation or wait til > > we > > > get back? If he had a fatty oxidation disorder > > does > > > that mean the diet isn't working at all? Might he > > > even do better seizure wise w/a lower ratio or > > should > > > I just stay put until after we get back from > > > travelling? I'm so torn w/what to do. I don't > > care > > > either way but I just want to help him. I haven't > > > even had time to look up fatty oxidation disorders > > - I > > > imagine since it's a metabolic disorder it's not > > going > > > to be good. UGHhhh..... > > > > > > Thanks in advance for your suggestions/advice! > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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